Frequency and Severity of Moral Distress in Nephrology Fellows: A National Survey.

INTRODUCTION: Moral distress is a negative affective response to a situation in which one is compelled to act in a way that conflicts with one's values. Little is known about the workplace scenarios that elicit moral distress in nephrology fellows. METHODS: We sent a moral distress survey to 148 nephrology fellowship directors with a request to forward it to their fellows. Using a 5-point (0-4) scale, fellows rated both the frequency (never to very frequently) and severity (not at all disturbing to very disturbing) of commonly encountered workplace scenarios. Ratings of ≥3 were used to define "frequent" and "moderate-to-severe" moral distress. RESULTS: The survey was forwarded by 64 fellowship directors to 386 fellows, 142 of whom (37%) responded. Their mean age was 33 ± 3.6 years and 43% were female. The scenarios that most commonly elicited moderate to severe moral distress were initiating dialysis in situations that the fellow considered futile (77%), continuing dialysis in a hopelessly ill patient (81%) and carrying a high patient census (75%), and observing other providers giving overly optimistic descriptions of the benefits of dialysis (64%). Approximately 27% had considered quitting fellowship during training, including 9% at the time of survey completion. CONCLUSION: A substantial majority of nephrology trainees experienced moral distress of moderate to severe intensity, mainly related to the futile treatment of hopelessly ill patients. Efforts to reduce moral distress in trainees are required.

Assessing Statewide All-Cause Future One-Year Mortality: Prospective Study With Implications for Quality of Life, Resource Utilization, and Medical Futility.

BACKGROUND: For many elderly patients, a disproportionate amount of health care resources and expenditures is spent during the last year of life, despite the discomfort and reduced quality of life associated with many aggressive medical approaches. However, few prognostic tools have focused on predicting all-cause 1-year mortality among elderly patients at a statewide level, an issue that has implications for improving quality of life while distributing scarce resources fairly. OBJECTIVE: Using data from a statewide elderly population (aged ≥65 years), we sought to prospectively validate an algorithm to identify patients at risk for dying in the next year for the purpose of minimizing decision uncertainty, improving quality of life, and reducing futile treatment. METHODS: Analysis was performed using electronic medical records from the Health Information Exchange in the state of Maine, which covered records of nearly 95% of the statewide population. The model was developed from 125,896 patients aged at least 65 years who were discharged from any care facility in the Health Information Exchange network from September 5, 2013, to September 4, 2015. Validation was conducted using 153,199 patients with same inclusion and exclusion criteria from September 5, 2014, to September 4, 2016. Patients were stratified into risk groups. The association between all-cause 1-year mortality and risk factors was screened by chi-squared test and manually reviewed by 2 clinicians. We calculated risk scores for individual patients using a gradient tree-based boost algorithm, which measured the probability of mortality within the next year based on the preceding 1-year clinical profile. RESULTS: The development sample included 125,896 patients (72,572 women, 57.64%; mean 74.2 [SD 7.7] years). The final validation cohort included 153,199 patients (88,177 women, 57.56%; mean 74.3 [SD 7.8] years). The c-statistic for discrimination was 0.96 (95% CI 0.93-0.98) in the development group and 0.91 (95% CI 0.90-0.94) in the validation cohort. The mortality was 0.99% in the low-risk group, 16.75% in the intermediate-risk group, and 72.12% in the high-risk group. A total of 99 independent risk factors (n=99) for mortality were identified (reported as odds ratios; 95% CI). Age was on the top of list (1.41; 1.06-1.48); congestive heart failure (20.90; 15.41-28.08) and different tumor sites were also recognized as driving risk factors, such as cancer of the ovaries (14.42; 2.24-53.04), colon (14.07; 10.08-19.08), and stomach (13.64; 3.26-86.57). Disparities were also found in patients' social determinants like respiratory hazard index (1.24; 0.92-1.40) and unemployment rate (1.18; 0.98-1.24). Among high-risk patients who expired in our dataset, cerebrovascular accident, amputation, and type 1 diabetes were the top 3 diseases in terms of average cost in the last year of life. CONCLUSIONS: Our study prospectively validated an accurate 1-year risk prediction model and stratification for the elderly population (≥65 years) at risk of mortality with statewide electronic medical record datasets. It should be a valuable adjunct for helping patients to make better quality-of-life choices and alerting care givers to target high-risk elderly for appropriate care and discussions, thus cutting back on futile treatment.

How to Retain the Trust of Patients and Families When We Will Not Provide the Treatment They Want.

How might clinicians best try to retain the trust of patients and family members after clinicians oppose giving a treatment? If clinicians can maintain the trust of patients and families in these situations, this may soften what may be the greatest possible loss--the death of a loved one. I discuss what clinicians seeking to retain trust should not do--namely impose their values and reason wrongly--and introduce strategies that clinicians may use to reduce both. I present five principles that clinicians can follow to try to retain trust, with examples that illustrate each. I suggest specific interventions that clinicians can make, especially when they anticipate that a patient and/or family may, in time, want a treatment that is futile.

Nurses' experiences of futile care at intensive care units: a phenomenological study.

The concept and meaning of futile care depends on the existing culture, values, religion, beliefs, medical achievements and emotional status of a country. We aimed to define the concept of futile care in the viewpoints of nurses working in intensive care units (ICUs). In this phenomenological study, the experiences of 25 nurses were explored in 11 teaching hospitals affiliated to Social Security Organization in Ghazvin province in the northwest of Iran. Personal interviews and observations were used for data collection. All interviews were recorded as well as transcribed and codes, subthemes and themes were extracted using Van Manen's analysis method. Initially, 191 codes were extracted. During data analysis and comparison, the codes were reduced to 178. Ultimately, 9 sub-themes and four themes emerged: uselessness, waste of resources, torment, and aspects of futility.Nurses defined futile care as "useless, ineffective care giving with wastage of resources and torment of both patients and nurses having nursing and medical aspects" As nurses play a key role in managing futile care, being aware of their experiences in this regard could be the initial operational step for providing useful care as well as educational programs in ICUs. Moreover, the results of this study could help nursing managers adopt supportive approaches to reduce the amount of futile care which could in turn resolve some of the complications nurses face at these wards such as burnout, ethical conflicts, and leave.

Patient-satisfaction surveys on a scale of 0 to 10: improving health care, or leading it astray?

Patient-satisfaction surveys can call attention to the importance of treating patients with dignity and respect, but good ratings depend more on manipulable patient perceptions than on good medicine. In fact, the pressure to get good ratings can lead to bad medicine.

Nonbeneficial treatment Canada: definitions, causes, and potential solutions from the perspective of healthcare practitioners*.

OBJECTIVE: Many healthcare workers are concerned about the provision of nonbeneficial treatment in the acute care setting. We sought to explore the perceptions of acute care practitioners to determine whether they perceived nonbeneficial treatment to be a problem, to generate an acceptable definition of nonbeneficial treatment, to learn about their perceptions of the impact and causes of nonbeneficial treatment, and the ways that they feel could reduce or resolve nonbeneficial treatment. DESIGN: National, bilingual, cross-sectional survey of a convenience sample of nursing and medical staff who provide direct patient care in acute medical wards or ICUs in Canada. MAIN RESULTS: We received 688 responses (response rate 61%) from 11 sites. Seventy-four percent of respondents were nurses. Eighty-two percent of respondents believe that our current means of resolving nonbeneficial treatment are inadequate. The most acceptable definitions of nonbeneficial treatment were "advanced curative/life-prolonging treatments that would almost certainly result in a quality of life that the patient has previously stated that he/she would not want" (88% agreement) and "advanced curative/life-prolonging treatments that are not consistent with the goals of care (as indicated by the patient)" (83% agreement). Respondents most commonly believed that nonbeneficial treatment was caused by substitute decision makers who do not understand the limitations of treatment, or who cannot accept a poor prognosis (90% agreement for each cause), and 52% believed that nonbeneficial treatment was "often" or "always" continued until the patient died or was discharged from hospital. Respondents believed that nonbeneficial treatment was a common problem with a negative impact on all stakeholders (> 80%) and perceived that improved advance care planning and communication training would be the most effective (92% and 88%, respectively) and morally acceptable (95% and 92%, respectively) means to resolve the problem of nonbeneficial treatment. CONCLUSIONS: Canadian nurses and physicians perceive that our current means of resolving nonbeneficial treatment are inadequate, and that we need to adopt new techniques of resolving nonbeneficial treatment. The most promising strategies to reduce nonbeneficial treatment are felt to be improved advance care planning and communication training for healthcare professionals.

Medical futility: a new look at an old problem.

Efforts to answer the question of whether or when physicians may unilaterally refuse to provide treatments they deem medically futile, but that are nonetheless demanded by patients or their surrogates, have been characterized as intractable failures. We propose a new look at this old problem and suggest reframing the debate in terms of the implicit social contract, in healthy democracies, between the medical profession and the society it serves. This ever-evolving contract is predicated upon providing patients with beneficial and desired medical care within the constraints of scarce resources and the characteristics of our health-care system. The contract ranges over a continuum of decisions, from those that do not need an explicit negotiated agreement with the patient or surrogate, to those that do. Between these two poles lies a contentious gray area, where the rights and obligations of patients and physicians are being shaped continuously by the many forces that are at play in a democratic society, including professional guidelines, social advocacy, legislation, and litigation. We provide examples of how this gray area has been and is negotiated around rights to refuse and demand a variety of life-sustaining treatments, and anticipate conflicts likely to arise in the future. Reframing the futility debate in this way reveals that the issue is not a story of intractable failure, but rather, a successful narrative about how democracies balance the legitimate perspectives of patients and physicians against a backdrop of societal constraints and values.

End-of-life decisions - some international comparisons.

Healthcare professionals often confront difficult issues in end-of-life care. Caregivers who question futile care and treatment can find themselves at odds with patients, family members and surrogates who stress patient autonomy. Many developed nations recognize hospital ethics committees as appropriate venues for discussion of end-of-life care, and palliative care initiatives in many hospitals play important roles in patient care at the end of life. As health systems worldwide confront diminishing resources and endless questioning on expenditures, the concept of medical futility has taken on increasing prominence. Medical professionals know intuitively that certain interventions near the end of life can neither extend life nor improve the quality of life remaining. In addition to medical futility, concerns about international economic pressures and enhanced recognition of patient autonomy lead to questions as to the appropriateness of withdrawing life-sustaining treatment, assisted suicide and euthanasia. While some appellate courts seem willing to entertain questions on the legal rights of patients to access certain end-of-life measures, legislative bodies appear reluctant to legalize assisted suicide and euthanasia.

Ten common questions (and their answers) on medical futility.

The term medical futility is frequently used when discussing complex clinical scenarios and throughout the medical, legal, and ethics literature. However, we propose that health care professionals and others often use this term inaccurately and imprecisely, without fully appreciating the powerful, often visceral, response that the term can evoke. This article introduces and answers 10 common questions regarding medical futility in an effort to define, clarify, and explore the implications of the term. We discuss multiple domains related to futility, including the biological, ethical, legal, societal, and financial considerations that have a bearing on definitions and actions. Finally, we encourage empathetic communication among clinicians, patients, and families and emphasize how dialogue that seeks an understanding of multiple points of view is critically important in preventing or attenuating conflict among the involved parties.

The frequency and cost of treatment perceived to be futile in critical care.

IMPORTANCE: Physicians often perceive as futile intensive care interventions that prolong life without achieving an effect that the patient can appreciate as a benefit. The prevalence and cost of critical care perceived to be futile have not been prospectively quantified. OBJECTIVE: To quantify the prevalence and cost of treatment perceived to be futile in adult critical care. DESIGN, SETTING, AND PARTICIPANTS: To develop a common definition of futile care, we convened a focus group of clinicians who care for critically ill patients. On a daily basis for 3 months, we surveyed critical care specialists in 5 intensive care units (ICUs) at an academic health care system to identify patients whom the physicians believed were receiving futile treatment. Using a multivariate model, we identified patient and clinician characteristics associated with patients perceived to be receiving futile treatment. We estimated the total cost of futile treatment by summing the charges of each day of receiving perceived futile treatment and converting to costs. MAIN OUTCOME AND MEASURE: Prevalence of patients perceived to be receiving futile treatment. RESULTS: During a 3-month period, there were 6916 assessments by 36 critical care specialists of 1136 patients. Of these patients, 904 (80%) were never perceived to be receiving futile treatment, 98 (8.6%) were perceived as receiving probably futile treatment, 123 (11%) were perceived as receiving futile treatment, and 11 (1%) were perceived as receiving futile treatment only on the day they transitioned to palliative care. The patients with futile treatment assessments received 464 days of treatment perceived to be futile in critical care (range, 1-58 days), accounting for 6.7% of all assessed patient days in the 5 ICUs studied. Eighty-four of the 123 patients perceived as receiving futile treatment died before hospital discharge and 20 within 6 months of ICU care (6-month mortality rate of 85%), with survivors remaining in severely compromised health states. The cost of futile treatment in critical care was estimated at $2.6 million. CONCLUSIONS AND RELEVANCE: In 1 health system, treatment in critical care that is perceived to be futile is common and the cost is substantial.

Explaining marginal benefits to patients, when "marginal" means additional but not necessarily small.

Patients and their families want us to be realistic, honest, and caring about their prognosis and their options, even when the news is bad. Most oncologists will tell a patient if he is not curable, but not give specific survival information unless prompted. As an example, chemotherapy for pancreas cancer improves survival and does not worsen quality of life, but the impact on lifespan is small. Patients with advanced pancreas cancer have options that increase their average survival by about 16/100 at 1 year, and by about 9 weeks compared with best supportive care, but almost all patients are dead by 24 months. As an example of "marginal benefit" ("marginal" is defined here as more than that offered by the alternative care, not necessarily small or worthless), erlotinib added to gemcitabine compared with gemcitabine alone improves survival by six additional people at 1 year, and an average of 2 weeks, with no survival tail. In addition, the additional drug cost alone can be more than $12,000 a month. We use this clinical practice as a way to describe marginal benefit to patients. Telling patients that they have incurable disease and that treatment is ineffective is hard. Partly as a result, only about a third of cancer patients are told they are going to die, and those who are not told live no longer but have worse medical outcomes, such as dying on a ventilator and less time with hospice. These difficult conversations can be done if the oncologist has the right medical information, the right script, and some decision aids.

Medical futility: a paradigm as old as Hippocrates.

Medical futility is a concept commonly used to describe medical therapy that has no known or anticipated immediate or long-term benefit for a patient. The concept of futility has existed since the time of Hippocrates and has become the predominant dilemma for many end-of-life situations. Today, clinicians grapple with ethical conflicts and concepts in their daily practice. Many healthcare providers use the concept of medical futility when they are talking with patients and families who are in a quandary about their loved one's care. This article provides an overview of medical futility.

[Allocation of resources in patients with bad prognosis: the need for debate]. / La adjudicación de recursos en los pacientes con mal pronóstico: la necesidad de un debate.

OBJECTIVE: Assess the opinion of health care professions on the awarding of resources when the patient has a bad prognosis. DESIGN: Survey type test where a scenario of a patient with a 6 month life prognosis is posed, differentiating between good and bad quality of life. It is evaluated if the following resources would be indicated if necessary: admission to ICU, hemodialysis, hip prosthesis, transplant, Hospital admission, antibiotics for bacterial infection, permanent pacemaker and surgery. To analyze the possible association between the variables, the Pearson's Chi Square Test or that of linear tendency was used. To determine if each person interviewed was appropriate in a different way based on the patient's quality of life status, the McNemar test was used. SETTING: University Hospital of 480 beds. PARTICIPANTS: Sample of 256 volunteers (physicians and nurses) from the Emergency Service, Intensive Care Unit and Operating Room. INTERVENTIONS: A responsible physician was in charge of personally distributing the survey during a 2-week period and to explain the possible doubts that could arise on it. RESULTS: A total of 23.8% of those surveyed considered that transplant would be indicated and 79.8% that permanent pacemaker would be indicated if the patient had a good quality of life. If there was bad quality of life, 9.1% would have always indicated hemodialysis (60.5% never), 2.8% hip prosthesis (81.1% never) and 4% complex surgery (78.8% never). There were also significant differences in all the variables studied, depending on whether the patient had good or bad quality of life. CONCLUSION: There is great variability on the allotment of resources for patients with limited possibilities of survival.

"I'm not ready for hospice": strategies for timely and effective hospice discussions.

Hospice programs offer unique benefits for patients who are near the end of life and their families, and growing evidence indicates that hospice can provide high-quality care. Despite these benefits, many patients do not enroll in hospice, and those who enroll generally do so very late in the course of their illness. Some barriers to hospice referral arise from the requirements of hospice eligibility, which will be difficult to eliminate without major changes to hospice organization and financing. However, the challenges of discussing hospice create other barriers that are more easily remedied. The biggest communication barrier is that physicians are often unsure of how to talk with patients clearly and directly about their poor prognosis and limited treatment options (both requirements of hospice referral) without depriving them of hope. This article describes a structured strategy for discussing hospice, based on techniques of effective communication that physicians use in other "bad news" situations. This strategy can make hospice discussions both more compassionate and more effective.

Perceptions of patients on the utility or futility of end-of-life treatment.

BACKGROUND AND OBJECTIVES: Definitions of medical futility, offered by healthcare professionals, bioethicists and other experts, have been rigorously debated by many investigators, but the perceptions of patients of futility have been explored only by a few. Patients were allowed to discuss their concerns about end-of-life care, so that their ideas about treatment futility or utility could be extrapolated by us. METHODS: In this cross-sectional study, in-depth, semistructured interviews were conducted with 30 elderly people who were receiving outpatient care in a large, urban Veterans Affairs medical centre in the US. Each of their healthcare providers was also interviewed. Participants were asked to consider four terms commonly used in advance directive forms (ie, life-sustaining treatment, terminal condition, state of permanent unconsciousness and decision-making capacity) and to discuss what these terms meant to them. Audiotapes of the open-ended interviews were transcribed and responses were coded and categorised by constant comparison, a commonly used qualitative method. RESULTS: The following four factors were taken into account by the participants when discussing end-of-life interventions and outcomes: (1) expected quality of life; (2) emotional and financial costs of treatment; (3) likelihood of treatment success; and (4) expected effect on longevity. CONCLUSIONS: Although the terms "utility" or "futility" were not generally used by the participants, segments of speech indicating their perceptions of these terms were identified. Treatment was not always discussed in the same way by patients and providers, but seemed to reflect the same four concerns. Therefore, it may be fruitful for providers to focus on these concerns when discussing end-of-life treatment options with their patients.

Living with dementia yields a heteronomous and lost existence.

The purpose of this study was to investigate the lived experience of dementia for spouses where one of them is diagnosed as having dementia. The study has been conducted using a phenomenological approach. Unstructured interviews were chosen in order to investigate the informants' lived experiences of dementia, both for the person with dementia and for his or her spouse. The essence of the phenomenon, the lived experience of dementia, is that the persons with dementia and their spouses live in a heteronomous existence in which they are lost and are strangers in their own world. The result of this is a life without coherence and a new but unknown meaning that can make them feel uncertain and puts them in a quandary. Whatever those with dementia and their spouses do, they have no real influence over their situation, which leads to feelings of awkwardness, perplexity, and futility.