Surrogate Perspectives on Patient Preference Predictors: Good Idea, but I Should Decide How They Are Used.

Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make treatment decisions for decisionally-incapacitated patients.This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n = 26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents' overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice.Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient's best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient's preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups.Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it.

Patients' Priorities for Surrogate Decision-Making: Possible Influence of Misinformed Beliefs.

BACKGROUND: Many patients have three primary goals for how treatment decisions are made for them in the event of decisional incapacity. They want to be treated consistent with their preferences and values, they want their family to be involved in making decisions, and they want to minimize the stress on their family. The present paper investigates how patients' beliefs about surrogate decision-making influence which of these three goals they prioritize. Methods: Quantitative survey of 1,169 U.S. patients to assess their beliefs about surrogate decision-making, and how these beliefs influence patients' priorities for surrogate decision-making. Results: Most patients believed that families in general (68.8%) and their own family in particular (83.4%) frequently, almost always, or always know which treatments the patient would want in the event of incapacity. Patients with these beliefs were more likely to prioritize the goal of involving their family in treatment decision-making over the goal of minimizing family stress. Most patients (77.4%) also believed their family would experience significant stress from helping to make treatment decisions. However, patients' priorities were largely unchanged by this belief. Conclusions: Prior reports suggest that patients overestimate the extent to which their family knows which treatments they want in the event of decisional incapacity. The present analysis adds that these patients might be more likely to prioritize the goal of involving their family in treatment decision-making, even when this results in the family experiencing significant distress. This finding highlights that patients' misinformed beliefs about their family's knowledge might influence patients' priorities for surrogate decision-making, raising important questions for clinical practice, policy, and future research.Supplemental data for this article is available online at https://doi.org/10.1080/23294515.2021.1983665.

A new method for making treatment decisions for incapacitated patients: what do patients think about the use of a patient preference predictor?

BACKGROUND: Surrogates frequently are unable to predict which treatment their charges would want and also can experience significant distress as a result of making treatment decisions. A new method, the patient preference predictor (PPP), has been proposed as a possible way to supplement the process of shared decision-making to address these two concerns. The PPP predicts which treatment the patient would want based on which treatment similar patients want in similar circumstances. The present article describes the results of the first evaluation to assess whether patients support the use of a PPP. METHODS: Self-administered survey of patients at a tertiary care centre. RESULTS: Overall, 1169 respondents completed the survey (response rate=59.8%). In the event that the respondent became unable to make decisions due to a car accident, 78.9% would want the PPP to be incorporated into the process of making treatment decisions for them. In contrast, 15.2% of respondents would not want the PPP to be used for them. Respondents who endorsed the PPP cited the possibility that its use could increase the chances that they receive the treatments they prefer and/or reduce the burdens on their surrogate decision-maker. CONCLUSIONS: The majority of respondents endorsed the possibility of incorporating a PPP into the process of shared decision-making based on its potential to increase surrogates' predictive accuracy and/or reduce surrogate distress. These data provide strong patient support for further research to assess whether, in practice, the use of a PPP can increase the chances that incapacitated patients receive the treatments they prefer and reduce the burden of making decisions on their surrogates.

Do Patients Want their Families or their Doctors to Make Treatment Decisions in the Event of Incapacity, and Why?

BACKGROUND: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet, there is a paucity of data on whether this approach is consistent with patients' preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. METHODS: Self-administered survey of patients at a tertiary care center. RESULTS: Overall, 1169 respondents completed the survey (response rate=59.8%). Of the 229 respondents who had previously designated a surrogate, 78.2% wanted their surrogate to make treatment decisions in the event of decisional incapacity, whereas 21.8% wanted their doctors to make treatment decisions. Of the 822 respondents who had not designated a surrogate, 66.1% wanted their family to make treatment decisions, whereas 33.9% wanted their doctors to make treatment decisions. The most common explanation provided for why respondents wanted their surrogate or family to make treatment decisions for them in the event of decisional incapacity was the belief that loved ones knew the patient's treatment preferences. CONCLUSIONS: Contrary to current practice, 33.9% of respondents who had not designated a surrogate, and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient's treatment preferences. This belief is undermined by prior research which suggests that surrogates and family members frequently are unable to predict which treatments their charges would want. Future research should assess these two concerns with current practice and, where necessary, identify approaches to address them.

Patients' priorities for treatment decision making during periods of incapacity: quantitative survey.

OBJECTIVE: Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making. METHOD: We employed a self-administered, quantitative survey of patients in a tertiary care center. RESULTS: Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants. SIGNIFICANCE OF RESULTS: Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

The CD8+ HLA-DR+ T cells expanded in HIV-1 infection are qualitatively identical to those from healthy controls.

HIV-induced immune activation leads to expansion of a subset of human CD8(+) T cells expressing HLA-DR antigens. Expansion of CD8(+) HLA-DR(+) T cells can be also observed in non-HIV settings including several autoimmune diseases and aging. Although these cells are felt to represent "immune exhaustion" and/or to be anergic, their precise role in host defense has remained unclear. Here, we report that this subset of cells exhibits a restricted repertoire, shows evidence of multiple rounds of division, but lacks markers of recent TCR engagement. Detailed cell cycle analysis revealed that compared with their CD8(+) HLA-DR(-) counterpart, the CD8(+) HLA-DR(+) T-cell pool contained an increased fraction of cells in S-phase with elevated levels of the G2/M regulators: cyclin A2, CDC25C, Cdc2 (CDK1), indicating that these cells are not truly anergic but rather experiencing proliferation in vivo. Together, these data support a hypothesis that antigen stimulation leads to the initial expansion of a CD8(+) pool of cells in vivo that undergo further expansion independent of ongoing TCR engagement. No qualitative differences were noted between CD8(+) HLA-DR(+) cells from HIV(+) and HIV(-) donors, indicating that the generation of CD8(+) HLA-DR(+) T cells is a part of normal immune regulation that is exaggerated in the setting of HIV-1 infection.

Cutting edge: L-selectin (CD62L) expression distinguishes small resting memory CD4+ T cells that preferentially respond to recall antigen.

Naive CD4+ T cells use L-selectin (CD62L) expression to facilitate immune surveillance. However, the reasons for its expression on a subset of memory CD4+ T cells are unknown. We show that memory CD4+ T cells expressing CD62L were smaller, proliferated well in response to tetanus toxoid, had longer telomeres, and expressed genes and proteins consistent with immune surveillance function. Conversely, memory CD4+ T cells lacking CD62L expression were larger, proliferated poorly in response to tetanus toxoid, had shorter telomeres, and expressed genes and proteins consistent with effector function. These findings suggest that CD62L expression facilitates immune surveillance by programming CD4+ T cell blood and lymph node recirculation, irrespective of naive or memory CD4+ T cell phenotype.