What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study.
ABSTRACT Several methods exist to elicit end-of-life treatment preferences. However, little work has been done to elicit from patients themselves the aspects of treatment decision-making most important to them when making end-of-life treatment decisions.
Participants consisted of 23 patients, 60 years of age and older with a primary diagnosis of congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or cancer identified by their physicians as having a limited life expectancy. They took part in in-depth semistructured interviews and focus groups in which they were asked to discuss how they had made previous decisions about the treatment of their illness and/or would think about making future decisions. Transcripts were analyzed qualitatively using the constant comparative method.
There were three major influences on treatment preferences: treatment burden, treatment outcome, and the likelihood of the outcome. Treatment burden was bearable if the outcome of treatment was desirable, but participants were less willing to endure the burden for more marginal outcomes. Certain outcomes were so unacceptable that they determined preference regardless of burden. However, some participants revealed that their willingness to tolerate these adverse outcomes may increase as their illness progresses. Although participants generally believed that physicians know with certainty the outcomes of treatment, most understood the concept of uncertainty, and the likelihood of a given outcome influenced their preferences.
A patient-centered approach to advance care planning needs to incorporate a consideration of both treatment burdens and treatment outcomes, including the likelihood of these outcomes. Patients' valuations of these outcomes may change over time.
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ABSTRACT: Patients are often encouraged to participate in treatment decision-making. Most studies on this subject focus on choosing between different curative treatment types. In the last phase of life treatment decisions differ as they often put more emphasis on weighing quantity against quality of life, such as whether or not to start treatment aimed at life prolongation but with the possibility of side effects. This study aimed to obtain insight into cancer patients' preferences and the reasons for patients' preferred role in treatment decision-making at the end of life.PLoS ONE 01/2014; 9(6):e100435. · 3.53 Impact Factor
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ABSTRACT: To compare the incidence of, and mortality after, intensive care unit (ICU) admission as well as the characteristics of critical illness in the multiple sclerosis (MS) population vs the general population. We used population-based administrative data from the Canadian province of Manitoba for the period 1984 to 2010 and clinical data from 93% of admissions to provincial high-intensity adult ICUs. We identified 5,035 prevalent cases of MS and a cohort from the general population matched 5:1 on age, sex, and region of residence. We compared these populations using incidence rates and multivariable regression models adjusting for age, sex, comorbidity, and socioeconomic status. From January 2000 to October 2009, the age- and sex-standardized annual incidence of ICU admission among prevalent cohorts was 0.51% to 1.07% in the MS population and 0.34% to 0.51% in matched controls. The adjusted risk of ICU admission was higher for the MS population (hazard ratio 1.45; 95% confidence interval [CI] 1.19-1.75) than for matched controls. The MS population was more likely to be admitted for infection than the matched controls (odds ratio 1.82; 95% CI 1.10-1.32). Compared with the matched controls admitted to ICUs, 1-year mortality was higher in the MS population (relative risk 2.06; 95% CI 1.32-3.07) and was particularly elevated in patients with MS who were younger than 40 years (relative risk 3.77; 95% CI 1.45-8.11). Causes of death were MS (9.3%), infections (37.0%), and other causes (52.9%). Compared with the general population, the risk of ICU admission is higher in MS, and 1-year mortality after admission is higher. Greater attention to preventing infection and managing comorbidity is needed in the MS population.Neurology 05/2014; · 8.30 Impact Factor
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ABSTRACT: Abstract Background: It is important to engage patients and surrogates in conversations about goals and preferences for medical treatment before high-risk surgery. However, few interventions have been tested to facilitate these discussions. Objective: To assess the acceptability and feasibility of a facilitated, structured conversation with patients and surrogates about patient goals and preferences for medical treatment during their visit to a preoperative testing center before high-risk surgery. Design: A randomized controlled pilot study in the preoperative testing center at a tertiary academic hospital over a 4-month period. Measurements: We used baseline and preoperative surveys to assess feasibility, and to compare differences in worry, surrogate burden, and patient-surrogate concordance about treatment preferences in conversation and control groups. We assessed acceptability of the conversation qualitatively and through surveys. Results: Of 146 eligible patients, 79 were approached, and 65 declined to participate. Thirteen completed the study and 8 were randomized to the structured conversation. Major recruitment barriers included lack of time, or surrogate unavailability. Most postconversation patients were less worried, and more hopeful for a good recovery before surgery; 7 of 8 would recommend the conversation. Six of 8 surrogates reported postoperatively that the conversation helped prepare them to be a surrogate. Concordance improved in the intervention group only. Conclusions: Current processes of care present major barriers to conducting facilitated conversations in the preoperative testing center. Among a small group of patients and surrogates, most found a structured conversation about the patient's goals and preferences for medical treatment helpful before high-risk surgery.Journal of palliative medicine 05/2014; · 1.84 Impact Factor