"What do you Mean I Cannot Consent For My Grandmother's Medical Procedure?": Key Issues With State Default Surrogate Decision Making Laws

When a patient is unable to make medical decisions, a health care surrogate must be designated to make decisions on the patient's behalf. Studies show that fewer than 20% of patients have completed health care representative forms to legally designate a surrogate. Without a prior designation, surrogates are determined via state statute. Currently, there is no up-to-date comprehensive evaluation of state surrogate legislation. A survey of state legislative codes was conducted to determine: 1) whether the state has a default surrogate statute; 2) who is included as an acceptable legal surrogate; and 3) whether there is a hierarchy to determine a final decision-maker. Currently, 36 states have enacted some form of surrogate statute. There is little consistency between states regarding who may serve as a surrogate decision- maker. The key challenges with state laws include: 1) a narrow list of persons who qualify as allowable legal surrogates; and 2) a lack of a hierarchy to determine a final decision-maker. The results of this survey show that state surrogate decision making laws have many flaws which could affect patient care. The narrow construction of state laws can leave patients in situations where they either have no qualified surrogate under the law, or where they have multiple surrogates with competing interests who may be unable to reach consensus on the patient's medical care. State laws need to be changed so that they accurately reflect the realities of clinical practice and expanded to allow a broader spectrum of potential surrogates

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

The effect of a state health care consent law on patient care in hospitals: A survey of physicians

Objective: When a patient cannot make medical decisions for him or herself, and has not appointed a healthcare representative, default state healthcare consent laws determine who is able to make healthcare decisions for the patient. The narrow construction of some state laws leaves many patients in situations where the closest person to the patient does not qualify as a representative under the law, or where the patient has too many representatives and a consensus cannot be reached on the patient’s medical care. Methods: In order to determine how state healthcare consent laws affect patient care in hospitals, a survey of 412 Indiana physicians was conducted. Results: The data shows 53.8% of physicians experienced a delay in patient care because they were unable to identify a legally appropriate health care representative. Almost half (46.01%) of physicians experienced delay of patient care due to the inability to identify a final decision maker when disputes arose between multiple legal representatives. Conclusions: The results of this study have important implications for hospital administrators as a delay in patient care can be costly and unnecessarily utilizes hospital resources. Additionally, the results of this study have important implications for the status of state surrogate decision making laws. Amending state laws to include more potential surrogates, has the potential to minimize delays in patient care and ensure that appropriate surrogates are making medical care decisions for patients without the undue burden of court intervention

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

Physician understanding and application of surrogate decision-making laws in clinical practice

Background: Although state surrogate laws are the most common way surrogate decision makers are identified, no studies have been conducted to determine physician understanding of these laws or how these laws are utilized during clinical practice. The purpose of this study is to better understand how surrogate decision-making laws function in practice. Methods: A cross-sectional survey of 412 physicians working in Indiana hospitals was conducted between November 2014 and January 2015 to determine physicians' knowledge of Indiana's surrogate decision-making law and physicians' approaches to hypothetical cases using the law in clinical practice. Results: Fewer than half of physicians (48%) were able to correctly identify all legally allowable surrogate decision makers. Of those physicians who knew the law, nearly all of them (98%) indicated that they would violate the law during clinical practice by allowing nonlegal surrogates such as grandchildren to make medical decisions. Conclusions: A majority of physicians endorse relying on surrogates who have strong ties to the patient but are not legally allowable in Indiana. It is possible that these decisions reflect sound ethical reasoning even though they are illegal. Due to the narrow construction of some state surrogate decision laws, physicians may be placed in the position where they must either choose to follow medical ethical principles or the law. To alleviate these issues, state surrogate decision laws need to be amended to include a broader list of surrogates, such as extended family and close friends

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

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