Patient Perception, Preference and Participation“They do what they think is the best for me.” Frail elderly patients’ preferences for participation in their care during hospitalization
Introduction
Health care professionals have a responsibility to involve patients in decisions concerning care and treatment. This has been accepted as ethically appropriate practice and is a part of health care legislation in many countries [1], [2], [3]. In addition, patient participation overall in decision making is associated with higher patient satisfaction and improved treatment outcomes [1], [4], [5]. MeSH defines patient participation as involvement in the decision-making process in matters pertaining to health.
It has been concluded that physicians cannot easily assume their patients’ wishes to participate in clinical decision making, as patient preferences for involvement in shared decision making tend to be varied [6], [7], [8], [9], [10], [11]. Some studies show that the variability in patient choice could be anticipated from demographic factors such as age and educational level, meaning the higher the education, the higher the desire for participation, and the older the patient, the lower the desire for participation [12], [13], [14], [15], [16], but this finding is not consistent [7], [17].
There is abundant literature showing the benefits of patient participation [1], [4], [9], [18], [19], [20], [21], but as stated in the Cochrane report by Wetzels et al. [22], the number of relevant studies found on patient participation in older patients is strikingly few, despite a highly sensitive search technique. This Cochrane report was done in the context of primary care, but what do we know about patient participation in hospital, regarding older patients?
Elkin et al. [23] found — in the context of chemotherapy treatment of metastatic colorectal cancer — that about half the patients (n = 73; mean age 76 years) preferred a passive role in the treatment decision-making process, and Degner and Sloan [8], in a study of 436 newly diagnosed cancer patients, found that the majority (59%) of patients wanted physicians to make treatment decisions on their behalf (n = 436, mean age 63 years).
We did not find any studies on fragile, hospitalized elderly patients. Unfortunately the western world lacks a consensus definition [24] of the “frail elderly”, who are characterized by many concomitant diseases and, often, rapidly declining health. In this study we use the most-accepted definition suggested by the Swedish National Centre of Epidemiology in 2001: It translates directly into English as “A person older than 75 years of age who has been hospitalized three or more times in the last 12 months and has three or more diagnoses in their medical records according to the International Classification of Diseases (ICD-10)” [25] (authors’ translation). The coming half-century will see a dramatic increase in the population of elderly age groups — and the group of very old is growing most rapidly in the western world, including in the United States. According to a study based on a multicenter computerized database of 70 hospitals in 25 states in the United States, 15% of emergency department (ED) visits were by patients 65 years or older. Thirty-two percent of elderly patients seen in EDs were admitted to hospital, compared with 7.5% of non-elderly patients [26]. This highly care-consuming group of frail elderly patients accounts for 13.2% of all hospital inpatient days in Sweden and consumes 19% of all costs of hospital care [27]. The frail elderly are, therefore, a very important group of patients to focus on, due to their rising number and rising economic impact on health care costs, and due to the challenge of adjusting the hospital care system to meet the needs of these patients. Little is known about elderly patients’ preferences for participation in their care during hospitalization, especially the group of very frail elderly, who face many medical decisions and many hospital inpatient days, most often acutely admitted.
This study will be a contribution to research in this area.
The aim of the current study is to deepen the knowledge of frail elderly patients’ preferences for participation in medical decision making during acute hospitalization.
Section snippets
Methods
The study consisted of 15 qualitative interviews of fragile elderly patients. The patients had recently been hospitalized in one of two middle-sized hospitals in an area of Sweden having a total population of around 350,000 inhabitants. The hospitals are responsible for all acute hospital care in the area for all age groups.
Information about the study was distributed in the hospitals, the patients were identified by nurses and doctors as persons more than 75 years of age who had been
Results
A total of 15 patients were interviewed, 3 of them while still in hospital, the rest in their own homes. The patients were living in both rural districts and urban areas. Three of the patients lived in a special facility for the elderly.
Most of the interviews were done 0–2 weeks after discharge. The patients were between 75 and 96 years of age. More demographic data can be found in Table 1. The average number of hospital stays was five and a half in the previous year, meaning that the patients
Participation through communication
According to the main result of this study participation the patients, first and foremost, means information. Patients want to be informed about investigative procedures, diagnostic considerations, their illnesses, and their treatment, and want better communication concerning their care. They want to be listened to when they are explaining how they feel or what they think about their condition, and they want to understand what is happening to them. The patients expressed their wish to be
Conflict of interest
There are no financial or personal conflicts in this study.
Author contributions: The interviews and coding were mainly done by the first author. The third author read all the condensed units of meaning and also questioned the preliminary analysis. The second author reviewed the manuscript as a whole from a gerontological point of view.
Sponsor's role: The main author is an employee of the County Council of Eastern Östergötland, which financed all costs for this study.
The authors confirm all
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