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Frail and Elderly Hospital Patients: The Challenge of Participation in Medical Decision Making
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: In research, patient participation in medical decision-making has been shown to be associated with higher patient satisfaction and improvement of treatment outcomes. But when it comes to patient participation when being old and frail there are pitfalls and the research in this area is sparse.

The aim of this thesis is to explore participation in medical decision making of the frail elderly patient in hospital from the perspectives of patients themselves and the health care staff. In this thesis frail, elderly patients is defined as individuals 75 years old or older, who during the past 12 months have received inpatient hospital care three or more times and who have three or more diagnoses in three or more diagnostic groups according to the classification system ICD-10.

The participants were frail patients’ in hospital or newly discharged and it was health care personnel working with frail elderly patients. In three of the studies the method was mainly qualitative (Paper I, III, IV) and in one (Paper II) quantitative. The qualitative methods were one-to-one tape-recorded interviews of 25 patients (Paper I and IV), 18 personnel (III and IV), 5 focus group interviews of physicians (Paper III) and 26 days of observations in hospital wards (IV). Chosen methodologies of analysis were content analysis and Grounded Theory. The quantitative study (II) was a cross-sectional survey using telephone interviews with patients (n= 156). This material was descriptively analysed and examined using weighted kappa statistics.

Results: The results reported in Paper II show that elderly patients generally want to participate more in medical decision making than they do, though preferences for degree of participation are highly individualized – both findings important to consider in clinical practice.

According to the patients important key concepts of patient participation in medical decision making are to be listened to and to be informed (Paper I). The main reasons for not being able to participate included having many illnesses and generally, overall bad medical condition (Paper II). Also, cited as a problem was difficulty in understanding medical information, for example when given by a foreign-speaking physician (Paper I, II and IV). Frail, elderly patients complained that they were less informed than was their preference (Paper I, II and IV).

Moderate agreement was obtained between patient’s preferred and actual roles in medical decision making. Patients often expressed gratitude and confidence in their health care (Paper I and IV), but also, sympathy for stressed health care personnel who had so much to do.

The frail elderly patients do sometimes feel like a burden to the health care (Paper I and IV). The professionals gave expressions of trying to avoid taking care of frail elderly patients and at the same time expressions of frustration and bad conscience not being able to take good care of them due to lack of time and lack of beds (Paper III, IV). Especially the physicians felt they were trapped between the needs of the patients’ and the remunerations system rewarding time-constricted health care production (number of investigations, operations, easy accessibility) – not a time-consuming holistic view on all illnesses and medications including communication with the patients and all caregivers involved (Paper III).

Both patients and the professionals perceive the hospital as some kind of “institution of power”, difficult to challenge, and the decisions of which one has to accept.

Conclusion: In this thesis there are shown a number of challenges to participation in medical decision making by frail, elderly patients, which thus limits quality of care for this patient group. Health care is revealed as not well adapted to meet these patients’ complex needs. A model is presented that explains how the organisation of health care, and the reimbursement system, does not facilitate a holistic view. The health care professionals appear to adapt to the organisation and the remuneration system, which leads to practices, such as, rapid discharges and a tendency to examine the patient for only one or a few problems. Finally a suggestion for a model to improve care of frail elderly patients is presented. This model includes the need of more hospital wards being able to work with a holistic view, better skills in gerontology and geriatrics and a more adapted remuneration system for the frail, elderly patients.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2012. , 84 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1297
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-81408ISBN: 978-91-7519-947-4 (print)OAI: oai:DiVA.org:liu-81408DiVA: diva2:552269
Public defence
2012-10-05, K1, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2012-09-13 Created: 2012-09-13 Last updated: 2017-07-07Bibliographically approved
List of papers
1. They do what they think is the best for me: Frail elderly patients' preferences for participation in their care during hospitalization.
Open this publication in new window or tab >>They do what they think is the best for me: Frail elderly patients' preferences for participation in their care during hospitalization.
2010 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 80, no 2, 233-240 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To deepen the knowledge of frail elderly patients' preferences for participation in medical decision making during hospitalization. METHODS: Qualitative study using content analysis of semi-structured interviews.

RESULTS: Patient participation to frail elderly means information, not the wish to take part in decisions about their medical treatments. They view the hospital care system as an institution of power with which they cannot argue. Participation is complicated by barriers such as the numerous persons involved in their care who do not know them and their preferences, differing treatment strategies among doctors, fast patient turnover in hospitals, stressed personnel and linguistic problems due to doctors not always speaking the patient's own language.

CONCLUSION: The results of the study show that, to frail elderly patients, participation in medical decision making is primarily a question of good communication and information, not participation in decisions about medical treatments.

PRACTICE IMPLICATIONS: More time should be given to thorough information and as few people as possible should be involved in the care of frail elderly. Linguistic problems should be identified to make it possible to take the necessary precautions to prevent negative impact on patient participation.

Keyword
Patient participation; Frail elderly; Hospitalization; Semi-structured interviews; Content analysis
National Category
Geriatrics
Identifiers
urn:nbn:se:liu:diva-52427 (URN)10.1016/j.pec.2009.10.026 (DOI)000280384500015 ()
Note
Original Publication: Anne Ekdahl, Lars Andersson and Maria Friedrichsen, They do what they think is the best for me: Frail elderly patients' preferences for participation in their care during hospitalization., 2010, Patient Education and Counseling, (80), 2, 233-240. http://dx.doi.org/10.1016/j.pec.2009.10.026 Copyright: Elsevier Science B.V., Amsterdam. http://www.elsevier.com/ Available from: 2010-02-02 Created: 2009-12-18 Last updated: 2015-06-10Bibliographically approved
2. Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised?: A cross-sectional survey
Open this publication in new window or tab >>Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised?: A cross-sectional survey
2011 (English)In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 11, no 46Article in journal (Refereed) Published
Abstract [en]

BACKGROUND:

Medical decision making has long been in focus, but little is known of the preferences and conditions for elderly people with co-morbidities to participate in medical decision making. The main objective of the present study was to investigate the preferred and the actual degree of control, i.e. the role elderly people with co-morbidities wish to assume and actually had with regard to information and participation in medical decision making during their last stay in hospital.This study was a cross-sectional survey including three Swedish hospitals with acute admittance. The participants were patients aged 75 years and above with three or more diagnoses according to the International Classification of Diseases (ICD-10) and three or more hospitalisations during the last year.

METHODS:

We used a questionnaire combined with a telephone interview, using the Control Preference Scale to measure each participant's preferred and actual role in medical decision making during their last stay in hospital. Additional questions were asked about barriers to participation in decision making and preferred information seeking role. The results are presented with descriptive statistics with kappa weights.

RESULTS:

Of the 297 elderly patients identified, 52.5% responded (n = 156, 46.5% male). Mean age was 83.1 years. Of the respondents, 42 of 153 patients said that they were not asked for their opinion (i.e. no shared decision making). Among the other 111 patients, 49 had their exact preferred level of participation, 37 had less participation than they would have preferred, and 23 had more responsibility than they would have preferred. Kappa statistics showed a moderate agreement between preferred and actual role (κw = 0.57; 95% CI: 0.45-0.69). Most patients wanted to be given more information without having to ask. There was no correlation between age, gender, or education and preferred role. 35% of the patients agreed that they experienced some of the various barriers to decision making that they were asked about: 1) the severity of their illness, 2) doctors with different treatment strategies, 3) difficulty understanding the medical information, and 4) difficulty understanding doctors who did not speak the patient's own language.

CONCLUSIONS:

Physicians are not fully responsive to patient preferences regarding either the degree of communication or the patient's participation in decision making. Barriers to participation can be a problem, and should be taken into account more often when dealing with hospitalised elderly people.

Place, publisher, year, edition, pages
London, UK: BioMed Central Ltd., 2011
Keyword
decision making, elderly
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-70696 (URN)10.1186/1471-2318-11-46 (DOI)
Available from: 2011-09-20 Created: 2011-09-14 Last updated: 2017-12-08Bibliographically approved
3. Too complex and time-consuming to fit in! Physicians' experiences of elderly patients and their participation in medical decision making: a grounded theory study
Open this publication in new window or tab >>Too complex and time-consuming to fit in! Physicians' experiences of elderly patients and their participation in medical decision making: a grounded theory study
2012 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 2, no 3Article in journal (Refereed) Published
Abstract [en]

Objective To explore physicians' thoughts and considerations of participation in medical decision making by hospitalised elderly patients.

Design A qualitative study using focus group interviews with physicians interpreted with grounded theory and completed with a questionnaire.

Setting and participants The setting was three different hospitals in two counties in Sweden. Five focus groups were conducted with physicians (n=30) in medical departments, with experience of care of elderly patients.

Results Physicians expressed frustration at not being able to give good care to elderly patients with multimorbidity, including letting them participate in medical decision making. Two main categories were found: ‘being challenged’ by this patient group and  ‘being a small part of the healthcare production machine’. Both categories were explained by the core category ‘lacking in time’. The reasons for the feeling of ‘being challenged’ were explained by the subcategories ‘having a feeling of incompetence’, ‘having to take relatives into consideration’ and ‘having to take cognitive decline into account’. The reasons for the feeling of ‘being a small part of the healthcare production machine’ were explained by the subcategories ‘at the mercy of routines' and ‘inadequate remuneration system’, both of which do not favour elderly patients with multimorbidity.

Conclusions Physicians find that elderly patients with multimorbidity lead to frustration by giving them a feeling of professional inadequacy, as they are unable to prioritise this common and rapidly growing patient group and enable them to participate in medical decision making. The reason for this feeling is explained by lack of time, competence, holistic view, appropriate routines and proper remuneration systems for treating these patients.

Place, publisher, year, edition, pages
B M J Group, 2012
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-80824 (URN)10.1136/bmjopen-2012-001063 (DOI)000315044800075 ()
Available from: 2013-03-28 Created: 2012-08-30 Last updated: 2017-12-07Bibliographically approved
4. ‘Are decisions about dischargeof elderly hospital patients mainlyabout freeing blocked beds?’: A qualitative observational study
Open this publication in new window or tab >>‘Are decisions about dischargeof elderly hospital patients mainlyabout freeing blocked beds?’: A qualitative observational study
Show others...
2012 (English)In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 2, no 6, 1-9 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To explore the interactions concerning thefrail and elderly patients having to do with dischargefrom acute hospital wards and their participation inmedical decision-making. The views of the patients andthe medical staff were both investigated.

Design: A qualitative observational and interviewstudy using the grounded theory.

Setting and participants: The setting was threehospitals in rural and urban areas of two counties inSweden of which one was a teaching hospital. The datacomprised observations, healthcare staff interviews andpatient interviews. The selected patients were all aboutto be informed that they were going to be discharged.

Results: The patients were seldom invited toparticipate in the decision-making regarding discharge.Generally, most communications regarding dischargewere between the doctor and the nurse, after which thepatient was simply informed about the decision. It wasobserved that the discharge information was oftengiven in an indirect way as if other, albeit absent,people were responsible for the decision. Interviewswith the healthcare staff revealed their preoccupationwith the need to free up beds: ‘thinking aboutdischarge planning all the time’ was the core category.This focus not only failed to fulfil the complex needs ofelderly patients, it also generated feelings of frustrationand guilt in the staff, and made the patients feelunwelcome.

Conclusions: Frail elderly patients often did notparticipate in the medical decision-making regardingtheir discharge from hospital. The staff was highlyfocused on patients getting rapidly discharged, whichmade it difficult to fulfil the complex needs of thesepatients.

Keyword
Frail elderly, Patient Participation, Discharge Planning, Qualitative observational study, Grounded theory, Hospital
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-81401 (URN)10.1136/bmjopen-2012-002027 (DOI)000315081400135 ()
Note

On the day of the defence date the title of this article was: “Focusing on acquiring available beds!” : The process of discharging elderly patients: A qualitative observational study.

Available from: 2012-09-13 Created: 2012-09-13 Last updated: 2017-12-07

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