Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing (...) the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making. Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments. DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system. Trial RegistrationISRCTN89993391. (shrink)

Background: In end of life care, ethical problems often come to the fore. Little research is performed on ways or strategies for handling those problems and even less on obstacles to and possibilities of using such strategies. A previous study illuminated stroke team members’ experiences of ethical problems and how the teams managed the situation when caring for patients faced with sudden and unexpected death from stroke. These findings have been further explored in this study. Objective: The aim of the (...) study was to illuminate obstacles and possibilities perceived by stroke team members in using strategies for handling ethical problems when caring for patients afflicted by sudden and unexpected death caused by stroke. Research design: A qualitative method with combined deductive and inductive content analysis was utilized. Participants and research context: Data were collected through individual interviews with 15 stroke team members working in stroke units of two associated county hospitals in western Sweden. Ethical considerations: The study was approved by the Regional Ethics Review Board, Gothenburg, Sweden. Permission was also obtained from the director of each stroke unit. Findings: All the studied strategies for handling of ethical problems were found to have both obstacles and possibilities. Uncertainty is shown as a major obstacle and unanimity as a possibility in the use of the strategies. The findings also illuminate the value of the concept “the patient’s best interests” as a starting point for the carers’ ethical reasoning. Conclusion: The concept “the patient’s best interests” used as a starting point for ethical reasoning among the carers is not explicitly defined yet, which might make this value difficult to use both as a universal concept and as an argument for decisions. Carers therefore need to strengthen their argumentation and reflect on and use ethically grounded arguments and defined ethical values like dignity in their clinical work and decisions. (shrink)

The increasing accuracy of algorithms to predict values and preferences raises the possibility that artificial intelligence technology will be able to serve as a surrogate decision-maker for incapacitated patients. Following Camillo Lamanna and Lauren Byrne, we call this technology the autonomy algorithm. Such an algorithm would mine medical research, health records, and social media data to predict patient treatment preferences. The possibility of developing the AA raises the ethical question of whether the AA or a relative ought to serve as (...) surrogate decision-maker in cases where the patient has not issued a medical power of attorney. We argue that in such cases, and against the standard practice of vesting familial surrogates with decision making authority, the AA should have sole decision-making authority. This is because the AA will likely be better at predicting what treatment option the patient would have chosen. It would also be better at avoiding bias and, therefore, choosing in a more patient-centered manner. Furthermore, we argue that these considerations override any moral weight of the patient’s special relationship with their relatives. (shrink)

Objective: To measure the stability of life-sustaining treatment preferences amongst older people and analyse the factors that influence stability. Design: Longitudinal cohort study. Setting: Primary care centres, Granada (Spain). Eighty-five persons age 65 years or older. Participants filled out a questionnaire with six contexts of illness (LSPQ-e). They had to decide whether or not to receive treatment. Participants completed the questionnaire at baseline and 18 months later. Results: 86 percent of the patients did not change preferences. Sex, age, marital status, (...) hospitalisation, and self-perception of health and pain did not affect preferences. Morbidity and the death of a relative did. Conclusion: Stability of preferences of older persons in relation to end-of-life decisions seems to be more probable than instability. Some factors, such as the death of a relative or the increase in morbidity, can change preferences. These findings have implications for advance directives (ADs) and advance care planning. (shrink)

As medical technology continues to improve, more people will live longer lives with multiple chronic illnesses with increasing cumulative debilitation, including cognitive dysfunction. Combined with the aging of society in most developed countries, an ever-growing number of patients will require surrogate decision-makers. While advance care planning by patients still capable of expressing their preferences about medical interventions and end-of-life care can improve the quality and accuracy of surrogate decisions, this is often not the case, not infrequently leading to demands for (...) ineffective, inappropriate and prolonged interventions. In 1980 LaFollette called for the licensing of prospective parents, basing his argument on the harm they can do to vulnerable people. In this paper, I apply his arguments to surrogate decision-makers for cognitively incapacitated patients, rhetorically suggesting that we require potential surrogates to qualify for this position by demonstrating their ability to make reasonable and rational decisions for others. I employ this theoretical approach to argue that the loose criteria by which we authorize surrogates’ generally unchallenged power should be reconsidered. (shrink)