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End-of-life care in a Swedish county: patterns of demographic and social conditions, clinical problems and health care use
University of Skövde, School of Life Sciences.
2006 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

There is broad consensus in both international and national policy statements that care provided at end-of-life should be different from care provided during other periods of life. There is a need for comprehensive knowledge about the broad population of individuals who access the public health care system during the last period of life. The purpose of this thesis therefore, is to make a contribution to a broader understanding of the nature of end of-life and end-of-life care for these individuals. The study was undertaken through retrospective examinations of death certificates, medical records and nursing records in a randomly selected sample of adults who accessed the public health care system, and who died in the County of Västra Götaland, Sweden, during 2001. The sample consisted of 229 persons. The majority of individuals in this study were aged eighty or more at time of death. Men died four years younger, and were significantly more likely to live apart from their partners at time of death, whereas women were significantly more likely to live alone. There were also significant differences in residential environment at time of death, with one-half residing in private homes and the other half in residential care facilities, and this environment was significantly associated with many of the variables analyzed in this study. The group in residential care facilities was, on average, nearly 10 years older than those in private homes. The most common places of death were acute care hospitals and residential care facilities. The less old persons more often died at acute care hospitals whereas the oldest group more commonly died at residential care facilities. The likelihood of inpatient care during last three months of life, including the expected number of hospital admissions, was significantly higher among residents of private homes than among individuals in residential care facilities. However, the presence of mental disorder(s), mainly dementia, was associated with less utilization of both inpatient and hospital-based outpatient care, regardless of residence. Conversely, the likelihood of using outpatient primary care services was significantly higher among residents of residential care facilities than among those in private homes. Factors such as advancing age, ADL-dependency, and living alone increased the likelihood of receiving care at residential care facilities, whereas presence of neoplasm(s) and musculoskeletal disease(s) increased the likelihood of care in a private home. The mean number of all health care services used was 2.67. A wide range of highly prevalent symptoms and problems was identified in the study group, especially among persons who were ADL-dependent. A specific turning point, reflecting onset of the dying process and reorientation of care, was documented in almost three-quarters of the medical or nursing records. Two thirds of these turning points were documented within the last week of life. Findings from this study provide policymakers, health care providers, and professional caregivers with both a reminder and a framework which may contribute to a more mindful and comprehensive understanding of commonplace end-of-life concerns. It is, in fact, suggested that the public health care system as a whole take greater note of the present situation and that it proactively focus on the development of standards for end-of-life care. Its content should be formulated and based on systematic and detailed insights into the identities of the individuals who utilize the health care system at the end of life, where and from whom they receive care, and most importantly, the nature of their problems and needs. Moreover, steps must be taken to continually audit end-of-life care provided by the public health care system, with an objective to constantly improve the scope, quality, and trustworthiness of its services

Place, publisher, year, edition, pages
Göteborgs Unversitet, Institute of Health Care Sciences , 2006.
Keyword [en]
End-of-life, end-of-life care, demographics, social conditions, health care utilization, places of death, clinical problems, turning point
National Category
Nursing
Research subject
Humanities and Social sciences
Identifiers
URN: urn:nbn:se:his:diva-2026ISBN: 91-628-7038-6 OAI: oai:DiVA.org:his-2026DiVA: diva2:32302
Public defence
(English)
Available from: 2008-05-07 Created: 2008-05-07 Last updated: 2010-04-14
List of papers
1. End-of-life in a Swedish population: demographics, social conditions and characteristics of places of death
Open this publication in new window or tab >>End-of-life in a Swedish population: demographics, social conditions and characteristics of places of death
2006 (Swedish)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 20, no 1, 10-17 p.Article in journal (Refereed) Published
Abstract [en]

The objectives of this study were to identify and describe the demographics and social conditions as well as characteristics of the places of death in a randomly selected sample that died in a county in Sweden during 2001. The present study reports part of the findings from a larger study undertaken during 2003 using a survey design of retrospective reviews of death certificates, medical records, and nursing records. Among several noteworthy findings are: first, an examination of these individuals’ living arrangements reveal not only a large and vulnerable group that lives alone at the end-of-life but also a group living separated from their partners near end-of-life; second, individuals differ with respect to residence prior to death, that is private homes versus residential care facilities, imparting highly different contexts of care at the end-oflife, and third, a high prevalence of institutionalized deaths

demonstrates that places of death other than hospitals and residential care facilities are uncommon, if not rare. It is concluded that increased attention to the social circumstances of the time period surrounding individuals’ at the end-of-life is essential.

There is need to develop more integrated models of care for dying people. Contemporary services available are not designed to meet a wide range of peoples’ needs at the endof- life. Home-based care, residential care and hospital care must be adapted to the changing patterns of dying. The services available should be organized to the benefit of the users rather than around the providers. This is the first study of its kind of a Swedish sample and while the data

are limited to one county in Sweden its findings may contribute to a deeper understanding of demographic and social patterns at the end-of-life in general.

Place, publisher, year, edition, pages
Blackwell Publishing, 2006
National Category
Medical and Health Sciences
Research subject
Medical sciences
Identifiers
urn:nbn:se:his:diva-1785 (URN)10.1111/j.1471-6712.2006.00374.x (DOI)000235467600003 ()16489955 (PubMedID)2-s2.0-33645109192 (Scopus ID)
Available from: 2007-10-10 Created: 2007-10-10 Last updated: 2013-04-10Bibliographically approved
2. Clinical problems at the end of life in a Swedish population, including the role of advancing age and physical and cognitive function
Open this publication in new window or tab >>Clinical problems at the end of life in a Swedish population, including the role of advancing age and physical and cognitive function
2008 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 36, no 2, 177-182 p.Article in journal (Refereed) Published
Abstract [en]

To improve the understanding of specific clinical problemsat the end of life, including the role of advancing age, physicalfunction and cognitive function. Methods: The study is partof an explorative survey of data relevant to end-of-life healthcareservices during the last 3 months of life of a randomly selectedsample of the population of a Swedish county. Data were selectedthrough retrospective reviews of death certificates and medicalrecords, and comprise information from 12 municipalities and229 individuals. Results: A range of prevalent concerns wasfound. Overall deterioration, urinary incontinence, constipation,impaired skin integrity, anxiety and sleep disturbances weresignificantly associated with dependency on others for activitiesof daily living; pulmonary rattles and swallowing disturbanceswere associated with cognitive disorientation; excepting cough,advancing age did not have significant impacts on these prevalentclinical concerns. Conclusions: A range of distressing conditionsconstitute a common pathway for many individuals at or nearthe end of life. The incorporation of health promotion as aprinciple of palliative care will probably benefit individualsat the end of life, and includes a proactive focus and emphasison enhanced well-being at the time of diagnosis of a life-threateningillness. For individuals with physical and cognitive limitationsimparting a state of dependency, it is reasonable to provideassurance of care for individuals' specific needs by professionalswith both training for and competence in this special and sometimesunique clinical environment.

Place, publisher, year, edition, pages
Sage Publications, 2008
Keyword
Clinical problems, end of life, health promotion, palliative care, survey, symptoms
National Category
Medical and Health Sciences
Research subject
Medical sciences
Identifiers
urn:nbn:se:his:diva-2547 (URN)10.1177/1403494807085375 (DOI)000255067200009 ()18519282 (PubMedID)2-s2.0-40549144052 (Scopus ID)
Available from: 2009-01-19 Created: 2009-01-19 Last updated: 2013-04-15Bibliographically approved
3. Utilization of health-care services at the end-of-life
Open this publication in new window or tab >>Utilization of health-care services at the end-of-life
Show others...
2006 (English)In: Health Policy, ISSN 0168-8510, Vol. 82, no 3, 276-287 p.Article in journal (Refereed) Published
Abstract [en]

End-of-life care poses a growing clinical and policy concern since most people who are dying utilize health-care services during this period of life. Hence, end-of-life care is a common and integral part of the care provided by health-care systems. There is a growing call for the implementation of a palliative approach as an integral part of all end-of-life care. The purpose of this study was thus to provide policy-makers, health-care providers and professional caregivers with increased knowledge about mainstream patterns of health-care utilization during end-of-life. The patterns of use of health-care services in a Swedish population who accessed the health-care system during their last 3 months of life were in this study examined through a retrospective examinations of medical and nursing records (n = 229). We found high prevalences of use of both hospital care, primary care and care provided in people's homes and nearly three quarters of the persons included in the study used between two and three health-care services. However, the probability of using different health-care services was found to be strongly depending on demographic, social, functional and disease related characteristics. The study reveals a considerable use of different health-care services during end-of-life. It is hence essential to, on one hand delineate how such health-care services best can support people at the end-of-life, and on the other hand develop policies which facilitate the process of dying, both in hospitals as well as in peoples’ homes. Implications for policy are discussed.

Place, publisher, year, edition, pages
Elsevier, 2006
National Category
Medical and Health Sciences
Research subject
Medical sciences
Identifiers
urn:nbn:se:his:diva-1939 (URN)10.1016/j.healthpol.2006.10.003 (DOI)000248429800002 ()17097757 (PubMedID)2-s2.0-34250815669 (Scopus ID)
Available from: 2008-04-09 Created: 2008-04-09 Last updated: 2013-04-10Bibliographically approved
4. The Turning Point: Clinical Identification of Dying and Reorientation of Care
Open this publication in new window or tab >>The Turning Point: Clinical Identification of Dying and Reorientation of Care
Show others...
2006 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 9, no 6, 1348-1358 p.Article in journal (Refereed) Published
Abstract [en]

Palliative care is increasingly organized within the setting of formal health care systems but the demarcation has become unclear between, on the one hand, care directed at cure and rehabilitation and palliative care aimed at relief of suffering on the other. With the purpose to increase the understanding about the turning point reflecting identification of dying and reorientation of care, this study explores this phenomenon as determined from health care records of a representative sample (n = 229). A turning point was identified in 160 records. Presence of circulatory diseases, sporadic confinement to bed, and deterioration of condition had a significant impact upon the incidence of such turning point. The time interval between the turning point and actual death ranged between one and 210 days. Thirty percent of these turning points were documented within the last day of life, 33% during the last 2–7 days, 19.5% during the last 8–30 days, 13% during the last 31–90 days, and 4.5% during the last 91–210 days of life. The time interval between the turning point and actual death was significantly longer among individuals with neoplasm(s) and significantly shorter among individuals suffering from musculoskeletal diseases. Perhaps this reflects a discrepancy between the ideals of palliative care, and a misinterpretation of the meaning of palliative care in everyday clinical practice. The findings underscore that improvement in timing of clinical identification of dying and reorientation of care will likely favour a shift from life-extending care to palliative care.

Place, publisher, year, edition, pages
Mary Ann Liebert, 2006
National Category
Medical and Health Sciences
Research subject
Medical sciences
Identifiers
urn:nbn:se:his:diva-1951 (URN)10.1089/jpm.2006.9.1348 (DOI)000243096200020 ()17187543 (PubMedID)2-s2.0-33845988749 (Scopus ID)
Available from: 2008-04-10 Created: 2008-04-10 Last updated: 2013-04-10Bibliographically approved

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