Surrogate Decision Makers and Proxy Ownership: Challenges of Privacy Management in Health Care Decision Making

This study explored the communicative experiences of surrogates who served as decision makers for patients who were unable to convey health information and choices about treatment options. Drawing on assumptions from communication privacy management theory (Petronio, 2002), 35 surrogates were interviewed to explore how they navigated the role of guardian of patients’ private health information while the patient was hospitalized. This research determined that not only are surrogates guardians and thereby co-owners of the patients’ private health information, they actually served in a “proxy ownership” role. Surrogates described obstacles to both obtaining and sharing private health information about the patient, suggesting that their rights as legitimate co-owners of the patients’ information were not fully acknowledged by the medical teams. Surrogates also described challenges in performing the proxy ownership role when they were not fully aware of the patient’s wishes. Theoretical and practical implications of these challenges are discussed

Older Adults and Forgoing Cancer Screening

Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients’ perceptions regarding cessation of cancer screening. Information on older adults’ views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening

Care Consistency With Documented Care Preferences: Methodologic Considerations for Implementing the “Measuring What Matters” Quality Indicator

A basic tenet of palliative care is discerning patient treatment preferences and then honoring these preferences, reflected by the inclusion of “Care Consistency With Documented Care Preferences” as one of 10 “Measuring What Matters quality” indicators. Measuring What Matters indicators are intended to serve as a foundation for quality measurement in health care settings. However, there are a number of logistic and practical issues to be considered in the application of this quality indicator to clinical practice. In this brief methodologic report, we describe how care consistency with documented care preferences has been measured in research on patients near the end of life. Furthermore, we outline methodologic challenges in using this indicator in both research and practice, such as documentation, specificity and relevance, preference stability, and measuring nonevents. Recommendations to strengthen the accuracy of measurement of this important quality marker in health care settings include consistent recording of preferences in the medical record, considerations for selection of treatment preferences for tracking, establishing a protocol for review of preferences, and adoption of a consistent measurement approach

Making Decisions for Hospitalized Older Adults: Ethical Factors Considered by Family Surrogates

Background Hospitalized older adults frequently have impaired cognition and must rely on surrogates to make major medical decisions. Ethical standards for surrogate decision making are well delineated, but little is known about what factors surrogates actually consider when making decisions. Objectives To determine factors surrogate decision makers consider when making major medical decisions for hospitalized older adults, and whether or not they adhere to established ethical standards. Design Semi-structured interview study of the experience and process of decision making. Setting A public safety-net hospital and a tertiary referral hospital in a large city in the Midwest. Participants Thirty-five surrogates with a recent decision making experience for an inpatient age 65 and older. Measurements Key factors surrogates considered when making decisions. Interview transcripts were coded and analyzed using the grounded theory method of qualitative analysis. Results Surrogates considered patient-centered factors and surrogate-centered factors. Patient-centered factors included: 1) respecting the patient’s input, (2) using past knowledge of patient to infer the patient’s wishes, and (3) considering what is in the patient’s best interests. Some surrogates expressed a desire for more information about the patient’s prior wishes. Surrogate-centered factors included 1) Surrogate’s wishes as a guide, (2) The surrogate’s religious beliefs and/or spirituality, (3) The surrogate’s interests, (4) Family consensus and (5) Obligation and guilt. Conclusion These data show that surrogate decision making is more complex than the standard ethical models, which are limited to patient autonomy and beneficence. Because surrogates also imagine what they would want under the circumstances and consider their own needs and preferences, models of surrogate decision making must account for these additional considerations. Surrogates’ desire for more information about patient preferences suggests a need for greater advance care planning

Doctor, What Would You Do?: An ANSWER for patients requesting advice about value-laden decisions

This article presents a previously published framework, summarized in the mnemonic ANSWER (A, Active listening; N, Needs assessment; S, Self-awareness/reflection; W, Whose perspective?; E, Elicit values; R, Respond) for how to respond to the question, “Doctor, what would you do?” when considering medical decisions that are preference-sensitive, meaning there is limited or debatable evidence to guide clinical recommendations, or are value-laden, such that the “right” decision may differ based on the context or values of a given individual. Using the mnemonic and practical examples, we attempt to make the framework for an ethically appropriate approach to these conversations more accessible for clinicians. Rather than a decision rule, this mnemonic represents a set of points to consider when physicians are considering an ethically acceptable response that fosters trust and rapport. We apply this approach to a case of periviable counseling, among the more emotionally challenging and value-laden antenatal decisions faced by providers and patients

Identifying Goals of Care

Goals of care conversations are important but complex for clinicians caring for older adults. Although clinicians tend to focus on specific medical interventions, these conversations are more successful if they begin with gaining a shared understanding of the medical conditions and possible outcomes, followed by discussion of values and goals. Although training in the medical setting is incomplete, there are many published and online resources that can help clinicians gain these valuable skills

Spiritual and Religious Coping of Medical Decision Makers for Hospitalized Older Adult Patients

Background: Critically ill adult patients who face medical decisions often delegate others to make important decisions. Those who are authorized to make such decisions are typically family members, friends, or legally authorized representatives, often referred to as surrogates. Making medical decisions on behalf of others produces emotional distress. Spirituality and/or religion provide significant assistance to cope with this distress. We designed this study to assess the role of surrogates' spirituality and religion (S/R) coping resources during and after making medical decisions on behalf of critically ill patients. The study's aim was to understand the role that S/R resources play in coping with the lived experiences and challenges of being a surrogate. Methods: Semistructured interviews were conducted with 46 surrogates by trained interviewers. These were audio-recorded and transcribed by research staff. Three investigators conducted a thematic analysis of the transcribed interviews. The codes from inter-rater findings were analyzed, and comparisons were made to ensure consistency. Results: The majority (67%) of surrogates endorsed belief in God and a personal practice of religion. Five themes emerged in this study. Personal prayer was demonstrated as the most important coping resource among surrogates who were religious. Trusting in God to be in charge or to provide guidance was also commonly expressed. Supportive relationships from family, friends, and coworkers emerged as a coping resource for all surrogates. Religious and nonreligious surrogates endorsed coping strategies such as painting, coloring, silent reflection, music, recreation, and reading. Some surrogates also shared personal experiences that were transformative as they cared for their ill patients. Conclusion: We conclude that surrogates use several S/R and other resources to cope with stress when making decisions for critically ill adult patients. The coping resources identified in this study may guide professional chaplains and other care providers to design a patient-based and outcome-oriented intervention to reduce surrogate stress, improve communication, increase patient and surrogate satisfaction, and increase surrogate integration in patient care. We recommend ensuring that surrogates have S/R resources actively engaged in making medical decisions. Chaplains should be involved before, during, and after medical decision making to assess and address surrogate stress. An interventional research-design project to assess the effect of spiritual care on surrogate coping before, during, and after medical decision making is also recommended

Symptom Burden in Geriatric Hospitalized ESRD Patients: Quantifying symptoms to increase Nephrologist Awareness and use of Palliative Care Consultation

poster abstractBackground: End Stage Renal Disease (ESRD) patients have significant symptom burden. Reduced provider awareness of symptoms contributes to underutilization of symptom management resources. Hypothesis: We hypothesize that improved nephrologist awareness of symptoms will lead to symptom improvement. Methods: In this prospective, multicenter intervention study, 27 geriatric ESRD inpatients underwent symptom assessment using the modified Edmonton Symptom Assessment System (ESAS) at admission and 1 week post-discharge. Enrollees were sequentially randomized into 2 groups. In group 1, the nephrologist of each individual was provided baseline symptom assessment and not in group 2. Severity ratings were compared between in-hospital and post discharge scores as well as between the 2 groups. Results: 26 patients completed the study; 1 died. There were no significant differences in baseline characteristics and scores, except increased diabetes in Group 2(P = 0.03). For 70% of the total cohort physicians reported not being surprised if the patient died within a year. Among the total cohort, total ESAS scores improved between initial and follow-up assessments except for depression, anxiety, lack of appetite and nausea. The absolute change in total ESAS scores was 10.9 in group1 and 6.8 in group2 (NS). Among individual symptoms significant improvement was found in pain and itching in group 1 only. Drowsiness and dyspnea improved in both groups. There was one palliative care consult. Conclusions: Our findings reinforce the high symptom burden in geriatric ESRD patients. Residual symptoms post hospitalization and low utilization of palliative care resources is suggestive of a missed opportunity by nephrologists to address the high symptom burden at the inpatient encounter which is selective for sicker patients and/or inadequacy of dialysis to control these symptoms. The trend in improvement in pain and itching in group 1 may indicate better achievable symptom control if physician awareness is increased and simple pharmacological interventions are available

Transitions From Skilled Nursing Facility to Home: The Relationship of Early Outpatient Care to Hospital Readmission

BACKGROUND: Many adults are discharged to skilled nursing facilities (SNFs) prior to returning home from the hospital. Patient characteristics and factors that can help to prevent postdischarge adverse outcomes are poorly understood. OBJECTIVE: To identify whether early post-SNF discharge care reduces likelihood of 30-day hospital readmissions. DESIGN: Secondary data analysis using the Electronic Medical Record, Medicare, Medicaid and the Minimum Data Set. PARTICIPANTS/SETTING: Older (age > 65 years), community-dwelling adults admitted to a safety net hospital in the Midwest for 3 or more nights and discharged home after an SNF stay (n = 1543). MEASUREMENTS: The primary outcome was hospital readmission within 30 days of SNF discharge. The primary independent variables were either a home health visit or an outpatient provider visit within a week of SNF discharge. RESULTS: Out of 8754 community-dwelling, hospitalized older adults, 3025 (34.6%) were discharged to an SNF, of whom 1543 (51.0%) returned home. Among the SNF to home group, a home health visit within a week of SNF discharge was associated with reduced hazard of 30-day hospital readmission [adjusted hazard ratio (aHR) 0.61, P < .001] but outpatient provider visits were not associated with reduced risk of hospital readmission (aHR = 0.67, P = .821). CONCLUSION: For patients discharged from an SNF to home, the finding that a home health visit within a week of discharge is associated with reduced hazard of 30-day hospital readmissions suggests a potential avenue for intervention

CEASE: A guide for clinicians on how to stop resuscitation efforts

Resuscitation programs such as Advanced Cardiac Life Support, Cardiac Life Support, Pediatric Advanced Life Support, and the Neonatal Resuscitation Program offer inadequate guidance to physicians who must ultimately decide when to stop resuscitation efforts. These decisions involve clinical and ethical judgments and are complicated by communication challenges, group dynamics, and family considerations. This article presents a framework, summarized in a mnemonic (CEASE: Clinical Features, Effectiveness, Ask, Stop, Explain), for how to stop resuscitation efforts and communicate that decision to clinicians and ultimately the patient’s family. Rather than a decision rule, this mnemonic represents a framework based on best evidence for when physicians are considering stopping resuscitation efforts and provides guidance on how to communicate that decision