Mark T. Hughes

How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study

OBJECTIVES: To determine the role terminally ill patients would opt to have their loved ones and physicians play in healthcare decisions should they lose decision‐making capacity and how this changes over time.

The Growth of Palliative Care in the United States

Palliative care has been one of the most rapidly growing fields of health care in the United States in the past decade. The benefits of palliative care have now been shown in multiple clinical trials, with increased patient and provider satisfaction, equal or better symptom control, more discernment of and honoring choices about place of death, fewer and less intensive hospital admissions in the last month of life, less anxiety and depression, less caregiver distress, and cost savings. The cost savings come from cost avoidance, or movement of a patient from a high cost setting to a lower cost setting. Barriers to expanded use include physician resistance, unrealistic expectations of patients and families, and lack of workforce. The future of palliative care includes more penetration into other fields such as nephrology, neurology, and surgery; further discernment of the most effective and cost-effective models; and establishment of more outpatient services.

Effect of an Internet-based Curriculum on Postgraduate Education: A Multicenter Intervention

We hypothesized that the Internet could be used to disseminate and evaluate a curriculum in ambulatory care, and that internal medicine residency program directors would value features made possible by online dissemination. An Internet-based ambulatory care curriculum was developed and marketed to internal medicine residency program directors. Utilization and knowledge outcomes were tracked by the website; opinions of program directors were measured by paper surveys. Twenty-four programs enrolled with the online curriculum. The curriculum was rated favorably by all programs, test scores on curricular content improved significantly, and program directors rated highly features made possible by an Internet-based curriculum.

A Video-Intervention to Improve Clinician Attitudes Toward Patients with Sickle Cell Disease: The Results of a Randomized Experiment

ABSTRACTBACKGROUNDClinician attitudes toward patients are associated with variability in the quality of health care. Attitudes are typically considered difficult to change, and few interventions have attempted to do so. Negative attitudes toward adults with sickle cell disease have been identified as an important barrier to the receipt of appropriate pain management for this patient population.OBJECTIVETo test the effect of a video-intervention designed to improve clinician attitudes toward adults with sickle cell disease.INTERVENTIONSAn 8-minute video depicting a clinician expert and patients discussing challenges in seeking treatment for sickle cell pain.DESIGN AND PARTICIPANTSA randomized post-test only control group design was used to assess the impact of the intervention on the attitudes of 276 nurses and housestaff working at a large, urban, academic medical center.MAIN MEASURESAttitudes toward adult sickle cell patients assessed using 5- and 6-point Likert-scale items. Exploratory factor analysis was used to identify underlying attitudinal domains and develop scales. Examples of the negative and positive attitudes assessed include clinician estimates of the percentage of SCD patients that exaggerate pain (negative) or make clinicians glad they went into medicine (positive).KEY RESULTSCompared to the control group, the intervention group exhibited decreased negative attitudes (Difference in means = -8.9, 95%CI [-14.2, -3.6]; Cohen’s d = 0.41), decreased endorsement of certain patient behaviors as “concern-raising” (Difference in means = -7.8, 95%CI [-13.1, -2.5]; Cohen’s d = 0.36), and increased positive attitudes toward sickle cell patients (Difference in means = 6.6, 95% CI [0.6, 12.6]; Cohen’s d = 0.27).CONCLUSIONSOur results suggest that the attitudes of clinicians toward sickle cell patients may be improved through a short and relatively easy to implement intervention. Whether the attitudinal differences associated with our intervention are sustainable or are linked to clinical outcomes remains to be seen.

Family health care decision making and self-efficacy with patients with ALS at the end of life

OBJECTIVE Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death. METHODS A descriptive correlational design with 16 patient-family member dyads was used. Quantitative findings were enriched with in-depth interviews of a subset of five family members following the patients death. RESULTS Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patients preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions. SIGNIFICANCE OF RESULTS The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families.

Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis

Aim: Patients with advanced cancer need information about end-of-life treatment options in order to make informed decisions. Clinicians vary in the frequency with which they initiate these discussions. Patients and methods: As part of a long-term longitudinal study, patients with an expected 2-year survival of less than 50% who had advanced gastrointestinal or lung cancer or amyotrophic lateral sclerosis (ALS) were interviewed. Each patient’s medical record was reviewed at enrollment and at 3 months for evidence of the discussion of patient wishes concerning ventilator support, artificial nutrition and hydration (ANH), resuscitation (DNR) and hospice care. A Kaplan–Meier analysis was also performed and 2-year survival calculated. Results: 60 cancer and 32 ALS patients were enrolled. ALS patients were more likely than cancer patients to have evidence of discussion about their wishes for ventilator support (31% vs 0%, p<0.001), ANH (38% vs 0%, p<0.001), DNR (25% vs 0%, p<0.001) and hospice care (22% vs 5%, p = 0.03). At 6 months, 91% of ALS patients were alive compared with 62% of cancer patients; at 2 years, 63% of ALS patients were alive compared with 23% of cancer patients (p<0.001). Conclusions: Cancer patients were less likely than ALS patients to have had documented advanced care planning discussions despite worse survival. This may reflect perceptions that ALS has a more predictable course, that advanced cancer has a greater number of treatment options, or differing views about hope. Nevertheless, cancer patients may be less adequately prepared for end-of-life decision-making.

Development and validation of the Family Decision-Making Self-Efficacy Scale

OBJECTIVE Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one. METHODS On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbachs alpha and for consistency from one administration to another using the test-retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated. RESULTS A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbachs alphas of .91 and .95, respectively. Test-retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario. SIGNIFICANCE OF RESULTS The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

CURVES: A Mnemonic for Determining Medical Decision-Making Capacity and Providing Emergency Treatment in the Acute Setting

The evaluation of medical decision-making capacity and provision of emergency treatment in the acute care setting may present a significant challenge for both physicians-in-training and attending physicians. Although absolutely essential to the proper care of patients, recalling criteria for decision-making capacity may prove cumbersome during a medical emergency. Likewise, the requirements for providing emergency treatment must be fulfilled. This article presents a mnemonic (CURVES: Choose and Communicate, Understand, Reason, Value, Emergency, Surrogate) that addresses the abilities a patient must possess in order to have decision-making capacity, as well as the essentials of emergency treatment. It may be used in conjunction with, or in place of, lengthier capacity-assessment tools, particularly when time is of the essence. In addition, the proposed tool assists the practitioner in deciding whether emergency treatment may be administered, and in documenting medical decisions made during an acute event.

Family Understanding of Seriously-ill Patient Preferences for Family Involvement in Healthcare Decision Making

BackgroundSurrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.ObjectiveTo evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.DesignCross-sectional survey.ParticipantsTwenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main MeasuresPatients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios.Key ResultsPatient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient’s preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient–family agreement (AOR 5.28, 1.07–26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02–14.54).ConclusionFamily members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.

Everyday ethics in internal medicine resident clinic: An opportunity to teach

Medical Education 2011: 45:712–721