The Need for Specialized Oncology Training for Clinical Ethicists.

Numerous ethical issues are raised in cancer treatment and research. Informed consent is challenging due to complex treatment modalities and prognostic uncertainty. Busy oncology clinics limit the ability of oncologists to spend time reinforcing patient understanding and facilitating end-of-life planning. Despite these issues and the ethics consultations they generate, clinical ethicists receive little if any focused education about cancer and its treatment. As the field of clinical ethics develops standards for training, we argue that a basic knowledge of cancer should be included and offer an example of what cancer ethics training components might look like. We further suggest some specific steps to increase collaboration between clinical ethicists and oncology providers in the outpatient setting to facilitate informed consent and proactively identify ethical issues.

Building family caregiver skills using a simulation-based intervention for care of patients with cancer: protocol for a randomized controlled trial.

BACKGROUND: Family caregivers of patients with cancer undergoing radiation therapy experience significant distress and challenges related to high symptom burden and complex care demands. This is particularly true for caregivers of patients with head and neck, esophageal, anal, rectal, and lung cancers, who are often receiving combined-modality treatment and may have tracheostomy tubes, gastrostomy tubes, or colostomies/ileostomies. This study aims to evaluate a simulation-based nursing intervention to provide information, support, and training to caregivers during radiation therapy. METHODS: This randomized controlled trial will include a sample of 180 patients and their family caregivers. Caregivers assigned to the control group will receive usual care and an informational booklet from the National Cancer Institute (NCI). Those in the intervention group will receive usual care, the NCI booklet, and three meetings with a nurse interventionist during radiation treatment followed by a booster call two weeks posttreatment. Intervention sessions focus on themes consistent with the trajectory of radiation therapy: the patient experience/needs, the caregiver experience and dyad communication, and transition to survivorship. Outcomes are measured at baseline, end of treatment (T2), and 4 (T3) and 20 (T4) weeks posttreatment, with the primary outcome being caregiver anxiety at T4. DISCUSSION: This trial is innovative in its use of simulation in a psychoeducational intervention for family caregivers. The intervention is administered at point-of-care and aimed at feasibility for integration into clinical practice. Patient quality of life and healthcare utilization measures will assess how providing support and training to the caregiver may impact patient outcomes. TRIAL REGISTRATION: The trial was registered on 08/14/2019 at ClinicalTrials.gov (identifier NCT04055948 ).

Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions.

Purpose: Adolescent and young adults (AYA) with cancer encounter many medical treatment decisions but may have variable desires for involvement in decision-making. This study describes the degree of decisional control AYA patients preferred in complex medical decisions. Methods: A cross-sectional descriptive correlational design evaluated experienced AYA patients' decision-making role preferences using the Control Preference Scale and explored relationships in a proposed model of decision control. Results: Overall, most patients preferred an "active collaborative" role (39%), where the patient prefers to make the final decision with input from the provider, or a "shared decision-making" role (34%), wherein the decision is jointly made between patient and provider. Oncology AYA patients tended to prefer a more passive role than nononcology AYA patients. Time since diagnosis also positively correlated with control preference, with patients preferring a more active level of decisional control as the number of days from diagnosis increased. While no other statistically significant relationships were found between factors put forth in the exploratory model and decision control, there were strong associations between the factors themselves that warrant future study. Conclusion: The findings advance the knowledge of AYA preferences for decision-making involvement, enhancing our ability to identify patients at risk for low health care engagement and explore the consequences of limited or impaired decisional capacity. Future research might examine interventions to promote self-management skills and patient decisional role preferences, fulfilling the need to respect both the desire for decision-making involvement of some patients and the preference to defer to the expertise of providers for others.

Association between strong patient-oncologist agreement regarding goals of care and aggressive care at end-of-life for patients with advanced cancer.

INTRODUCTION: The ability of oncologists to understand patients' goals of care is recognized as a key component of quality care. The purpose of this study is to examine the influence of patient-oncologist agreement regarding goals of care upon aggressive care at end of life (EOL) for patients with advanced cancer. METHODS: Patients with advanced cancer and their oncologists were interviewed at study enrollment and every 3 months thereafter until patient death or end of the study period (15 months). A 100-point visual analogue scale was used to represent goals of care, with quality of life (scored as 0) and survival (scored as 100) as anchors. Strong goal of care agreement for survival was defined as oncologist and patient dyadic goal of care scores that fell between 70 and 100 (100 = highest goal for survival) and for comfort, dyadic goal of care values that fell between 0 and 30 (0 = high goal for comfort). RESULTS: Two hundred and six patients and eleven oncologists provided data. At the last interview prior to death, 23.3% of dyads had strong goal of care agreement for either survival (8.3%) or comfort (15%) and 76.7% had no strong agreement. There was a significant association between aggressive care use and categories of dyadic agreement regarding goals of care (p = 0.024, Cramer's V = 0.15). CONCLUSIONS: A large percentage of oncologists did not understand their patients' EOL goals of care. While aggressive care aligned with categories of dyadic agreement for goals of care, high rates of aggressive care were reported.

Making Medical Decisions for Incapacitated Patients Without Proxies: Part II.

In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by the hospital. Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population.

Building Family Caregiver Skills Using a Simulation-Based Intervention: A Randomized Pilot Trial.

OBJECTIVES: To evaluate the feasibility, acceptability, safety, and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using structured simulations. SAMPLE & SETTING: 18 family caregivers of adult patients receiving radiation therapy for head and neck cancer at University Hospitals Seidman Cancer Center in Cleveland, Ohio. METHODS & VARIABLES: A two-group, randomized pilot trial design was used. The intervention consisted of four one-on-one sessions between the caregiver and nurse interventionist during the patient's first, second, fourth, and sixth week of radiation treatment. Participants completed measures of self-efficacy for caregiving, anxiety, depression, and health-related quality of life at baseline, during the fifth week of radiation therapy, and four weeks after radiation therapy. RESULTS: 4 of the 9 caregiver participants completed the intervention. Improvements in scores for the intervention group were noted for self-efficacy, global mental health, anxiety, and depression. IMPLICATIONS FOR NURSING: Refinement of the intervention is needed to improve feasibility. Although a caregiver intervention that incorporates simulation for skills training is acceptable and safe, flexibility in protocol is needed.

Educating Nursing Scientists: Integrating Genetics and Genomics into PhD Curricula.

Nursing science is a diverse field of study, the scope of which has broadened to more fully incorporate genetics and genomics. In recent years, these topics have become focus areas for many nursing researchers. However, recent evidence suggests that doctoral level nursing students and nursing faculty may be underprepared to conduct independent research using genomic approaches. Furthermore, genetics and genomics are severely underrepresented in doctoral level nursing curricula across the United States. This article suggests a thorough, yet manageable three-part curriculum designed to educate doctoral level nursing students on genetics, genomics, and their use in nursing science. Recommendations are then given for the integration of the curriculum into existing nursing PhD programs.

A National Study of Oncology Nurses Discussing Cancer Clinical Trials With Patients.

In the United States less than 10% of cancer patients engage in clinical trials. Although most oncology nurses have multiple opportunities to discuss clinical trials with patients, barriers including attitudes and social norms may impede these discussions. Guided by the Theory of Planned Behavior, we developed and evaluated measures for attitudes, subjective norms, and perceived behavioral control of nurses for discussing clinical trials with cancer patients. Of the 18,000 Oncology Nurse Society members invited, 1,964 completed the survey. Structural equation modeling and internal consistency reliability were used to evaluate items and constructs. We found that overall model fit and reliability was good: Confirmatory Fit Index (CFI) = 0.91, Root Mean Square Error of Approximation (RMSEA) = 0.05; attitudes, 21 items, alpha = 0.84; perceived behavioral control, 10 items, alpha = 0.85; and subjective norms, 9 items, alpha = 0.89. These measures of attitudes, subjective norms, and perceived behavioral control show good reliability and initial evidence of validity.

Importance of incorporating measures of attitude in planning and evaluating nursing education.

Learners' attitudes towards a topic or behavior has long been recognized as an important component in the evaluation of formal education as well as in achieving desired behavior change. However, attitudes are frequently neglected and evaluation of outcomes from continuing nursing education often includes only changes in knowledge and learner satisfaction. We describe measurement of attitudes of oncology nurses towards holding discussions with patients about the option of participating in a clinical trial, in comparison to what can be learned from measuring knowledge alone. This article illustrates important insights that can be gained through inclusion of measures of attitude in both designing and evaluating continuing education using data from a larger on-going study.

Analyzing Goals of Care in Advanced Cancer Patients and Their Family Caregivers: Evidence-based Research.

OBJECTIVE: The study objective was to determine concordance between patients and family caregivers' preferences for quality or length of life over time. BACKGROUND: Patients with advanced cancer are confronted with difficult decisions throughout their course of treatment and at end of life (EOL). These decisions can be influenced by their family caregivers' preferences for the patient's cancer treatment. METHODS: Using a longitudinal, descriptive study design from an on-going study, data were collected on an adult sample of patients with advanced stage GI or lung cancers and their family caregivers (n=237). Using a one item visual analog scale (0-100 with higher number indicating a preference for length of life over quality of life), patients and family caregivers were asked "regarding your/your loved one's care, what is most important to you right now?" Data were collected every 3 months until 15 months or patient's death. RESULTS: At enrollment, the preference scores between patients (48.5) and family caregivers (42.6) were closely aligned. At the last assessment prior to death, these scores diverged with the caregivers favoring goals associated with quality of life over length of life (p=.02). DISCUSSION: Patients and family caregivers have differing preferences and these goals of care can change over time. Attention to these differences could be used to guide conversations between patients and family caregivers regarding preferences at EOL.

Perceived Needs, Preparedness, and Emotional Distress of Male Caregivers of Postsurgical Women With Gynecologic Cancer

OBJECTIVES: To describe the perceived needs, preparedness, and emotional distress of male caregivers of postsurgical patients with gynecologic cancer during the transition from hospital to home. 
. SAMPLE & SETTING: 50 male caregivers of patients with gynecologic cancer on an inpatient unit at University Hospitals Seidman Cancer Center in Cleveland, OH.
. METHODS & VARIABLES: Caregiver needs, perceived preparedness, and emotional distress were measured at admission and at one week postdischarge. Instruments included the Comprehensive Needs Assessment Tool for Cancer Caregivers, Preparedness for Caregiving Scale, and National Comprehensive Cancer Network Distress Thermometer. The analysis consisted of descriptive statistics, Spearman's correlations, and univariate linear regressions.
. RESULTS: At both time points, male caregivers' greatest needs were interaction with the healthcare staff and information. Perceived preparedness was not associated with emotional distress. Male caregivers who were young, were employed, were unmarried, and had a lower income had greater needs.
. IMPLICATIONS FOR NURSING: A relational nursing care approach that maintains effective communication with male caregivers is essential. Nurses should broaden the caregiver assessment beyond the practical care of the patient.

Complexity Analysis of Decision-Making in the Critically Ill.

RATIONALE: Despite multiple trials of interventions to improve end-of-life care of the critically ill, there is a persistent lack of understanding of factors associated with barriers to decision-making at the end of life. OBJECTIVE: To apply the principles of complexity science in examining the extent to which transitions to end-of-life care can be predicted by physician, family, or patient characteristics; outcome expectations; and the evaluation of treatment effectiveness. METHODS: A descriptive, longitudinal study was conducted in 3 adult intensive care units (ICUs). Two hundred sixty-four family surrogates of patients lacking decisional capacity and the physicians caring for the patients were interviewed every 5 days until ICU discharge or patient death. MEASUREMENTS: Characteristics of patients, physicians, and family members; values and preferences of physicians and family; and evaluation of treatment effectiveness, expectations for patient outcomes, and relative priorities in treatment (comfort vs survival). The primary outcome, focus of care, was categorized as (1) maintaining a survival orientation (no treatment limitations), (2) transitioning to a stronger palliative focus (eg, some treatment limitations), or (3) transitioning to an explicit end-of-life, comfort-oriented care plan. MAIN RESULTS: Physician expectations for survival and future cognitive status were the only variables consistently and significantly related to the focus of care. Neither physician or family evaluations of treatment effectiveness nor what was most important to physicians or family members was influential. CONCLUSION: Lack of influence of family and physician views, in comparison to the consistent effect of survival probabilities, suggests barriers to incorporation of individual values in treatment decisions.

Family and Nurse Prognostication in Chronic Critical Illness.

AIMS: The aim of this study was to describe similarities and differences over time in expectations held by family members of long-term critically ill patients and the nurses caring for those patients. MATERIALS: In addition to demographic data, outcome expectations of family decision makers and ICU nurses were obtained by asking each participant to indicate expectations for the patient, 6 months in the future, for survival, cognition, and functional status. Families also were asked what kind of information was most important in understanding the patient's condition and what was most important in making decisions. METHODS: This was a descriptive correlational analysis. Nurses and family members were surveyed on the 3rd-5th day of the patient's stay, and every 5 days until discharge or death. Correlations between nurse and family predictions were examined using Pearson R. Repeated measures analysis of variance (RMANOVA) was used to explore the relationship between the family member's rating of what was most important in the care of the patient (survival vs. quality of life) and that individual's prediction of the likelihood of survival, over time. RESULTS: Family members consistently predicted better outcomes than nurses, with >80% of families predicting a high likelihood of survival, while <50% of nurses thought survival probability was high. There were similar differences in expectations for functional status and cognition. Between 14% and 23% of families indicated it was talking with the nurses that were most important. CONCLUSIONS: Results suggest a need for design and tests of nurse interventions aimed at improving family understanding of patient prognosis and future outcomes.

The Accuracy of Nurses' Predictions for Clinical Outcomes in the Chronically Critically Ill.

BACKGROUND: Accurately predicting survivorship of patients in the intensive care unit is known to be difficult. Previous research has shown that nurses are more likely to recognize futile medical care than other disciplines. The purpose of this study was to describe the accuracy of nurse's predictions for survival of patients who are chronically critically ill (CCI). METHODS: Using a secondary data analysis from a longitudinal, descriptive study, we evaluated nurses' predictions for survival at admission and until ICU discharge or patient death. RESULTS: Nurses were able to more accurately predict survival of CCI patients than death and prognostication appeared to improve with prolonged ICU stays. CONCLUSION: This is the first longitudinal study that focused on nurse prognostication in a chronically critically ill patient population. Future research should explore the relationship between ICU nurse characteristics and the accuracy of survival predictions.

The Role of Oncology Nurses in Discussing Clinical Trials.

PURPOSE/OBJECTIVES: To describe oncology nurses' experiences discussing clinical trials with their patients, and to assess barriers to these discussions.
. RESEARCH APPROACH: A qualitative study designed to elicit narratives from oncology nurses. 
. SETTING: Community- and academic-based oncology clinics throughout the United States.
. PARTICIPANTS: 33 oncology nurses involved in direct patient care in community-based and large hospital-based settings. The sample was drawn from members of the Oncology Nursing Society. 
. METHODOLOGIC APPROACH: In-depth interviews were conducted and analyzed using a immersion/crystallization approach to identify themes and patterns. The analyses highlight specific issues, examples, and contexts that present challenges to clinical trial discussions with patients.
. FINDINGS: Oncology nurses view their roles as patient educators and advocates to be inclusive of discussion of clinical trials. Barriers to such discussions include lack of knowledge and strategies for addressing patients' common misconceptions and uncertainty about the timing of discussions.
. INTERPRETATION: These data indicate that enabling nurses to actively engage patients in discussions of clinical trials requires educational interventions to build self-efficacy and close knowledge gaps. 
. IMPLICATIONS FOR NURSING: Oncology nurses can play a critical role in advancing cancer care by supporting patients in decision making about clinical trial participation. This will require training and education to build their knowledge, reduce barriers, and increase their self-efficacy to fulfill this responsibility in various clinical settings.

Multimorbidity With HIV: Views of Community-Based People Living With HIV and Other Chronic Conditions.

People living with HIV (PLWH) experience an increase in chronic conditions with aging, but little is known about experiences of living with multimorbidity with HIV. Because early palliative care services may improve well-being for individuals with multimorbidity, we planned to test an intervention to provide these services to community-dwelling PLWH with other chronic conditions. To tailor our intervention to the target population, we conducted four focus groups (n = 22) that elicited health-related needs, experiences, and views regarding palliative and other health services. We identified four themes related to patients' needs and experiences: views of HIV as background to other chronic conditions, challenges managing medications and provider interactions, concerns about coping with future health needs, and persistence of HIV stigma. In addressing multimorbidity with HIV, providers and patients may benefit from enhanced attention to communication when crossing specialty areas and from additional support to decrease stressors associated with HIV stigma.

A family-centered intervention for the transition to living with multiple myeloma as a chronic illness: A pilot study.

Patients with multiple myeloma and their family caregivers must master self-management tasks related not only to the disease and treatment, but also associated with transitioning to living with chronic illness. The aim of this study was to assess the feasibility, acceptability, safety, and fidelity of an intervention that had a psychoeducational approach and included a low-impact, home-based walking activity. A secondary aim was to obtain preliminary data of the effect of the intervention, as compared to an attention control group, on anxiety, activation for self-management, fatigue, depression and health-related quality of life (HRQOL). A sample of 15 adult patients with multiple myeloma and their family caregivers were randomized into either an intervention or attention-control group. The intervention was delivered to the dyad in one session and booster calls were made at 1 and 3 weeks. The control group received printed educational resources and telephone contacts. Measures were done at baseline, and 6 and 12 weeks. Descriptive statistics were used. The intervention was safe, feasible, and acceptable to patients and caregivers. Fidelity was high for the initial session, but low with booster calls. Improvement in scores for activation, fatigue, depression, anxiety, physical HRQOL, and emotional distress was seen in at least 40% of patients in the intervention group. Fewer caregivers in the intervention group showed improvement on the outcome variables. Leveraging a behavioral strategy such as walking, along with supportive and educational resources, is promising for promoting well-being within the patient/caregiver dyad. Further refinement of the intervention is needed to strengthen its efficacy for the caregiver and exploratory work is essential to understand the interpersonal supportive processes associated with the walking activity.

In My Best Interest.

BACKGROUND: Advance directives (ADs) have traditionally been viewed as clear instructions for implementing patient wishes at times of compromised decision-making capacity (DMC). However, whether individuals prefer ADs to be strictly followed or to serve as general guidelines has not been studied. The Veterans Administration's Advance Directive Durable Power of Attorney for Health Care and Living Will (VA AD) provides patients the opportunity to indicate specific treatment preferences and to indicate how strictly the directive is to be followed. OBJECTIVE: To describe preferences for life-sustaining treatments (LSTs) in various illness conditions as well as instructions for the use of VA ADs. DESIGN/SETTING: A descriptive study was performed collecting data from all ADs entered into the medical record at 1 VA Medical Center between January and June 2014. MEASUREMENTS: Responses to VA AD with emphasis on health care agents (HCAs) and LW responses. RESULTS: Veterans were more likely to reject LST when death was imminent (74.6%), when in a coma (71.1%), if they had brain damage (70.6%), or were ventilator dependent (70.4%). A majority (67.4%) of veterans preferred the document to be followed generally rather than strictly. Veterans were more likely to want VA ADs to serve as a general guide when a spouse was named HCA. CONCLUSION: Most of the sampled veterans rejected LST except under conditions of permanent disability. A majority intend VA ADs to serve as general guidelines rather than strict, binding instructions. These findings have significant implications for surrogate decision making and the use of ADs more generally.

Differences in Predictions for Survival and Expectations for Goals of Care between Physicians and Family Surrogate Decision Makers of Chronically Critically Ill Adults.

The purpose of this study was to determine the accuracy and concordance between physicians (MDs) and family surrogate decision makers (FSDMs) in predicting 3 month post-hospital patient mortality and concordance in identifying patient goals of care. A prospective cohort study was conducted in 3 intensive care units (ICUs). Two-hundred and sixty-four FSDMs and 54 attending MDs of patients who had resided in the ICU for >3 days were enrolled in the study. Expectation for mortality was measured dichotomously and goals of care were measured using a continuous visual analog scale. A value of 50 represented equal weight placed on goals of survival and QOL. Both MDs and FSDMs had mortality predictions that were lower than actual mortality. For MDs and FSDMs, their mortality predictions were most accurate at study enrollment. Discordance between MD and FSDM goals of care ranged from 36.4% at enrollment to 55.4% 15 days later (p=0.003). Our findings of optimistic prognosis for survival are consistent with the work of others. Our high rate of discordance regarding goals of care provided support for the need to establish standard processes to assure that values of patients and families are solicited and incorporated into treatment discussions for long-stay ICU patients.