Combining Patient Utility with Health Status Assessment to Improve Medical Decision Making

Physicians often use health status assessment tools to evaluate a patient's condition, then apply established guidelines to determine the most medically effective treatment. Yet additional criteria, such as the appropriateness of the treatment given the particular patient's preferences and attitude toward risk, are also highly relevant to quality care. While such preferences could be addressed via patient utility functions, their use in actual practice is somewhat limited because elicitation is often considered too burdensome for patients, unreliable, or redundant given other measures. For a small group of real patients who have suffered a stroke, we measure both traditional health status and patient utility for the current state to determine whether limited, focused utility assessment is a practical means of obtaining additional and relevant patient information. We find that utility assessment is perceived as reasonable and useful by patients, even when quite ill, and that utilities and health status are not redundant. In fact, investigating apparent inconsistencies between patient utility and observed health status can alert the physician to patient concerns and criteria not captured by more traditional measures. We propose an approach to medical decision making that uses both measures to improve patient–physician communication.     

On the aims of medicine: Comments on ‘philosophy of medicine as the source for medical ethics’

Health defined as the psychophysiological capacity to act or respond appropriately in a wide variety of situations, is enhanced by many means other than preventing and treating disease and injury. Therefore no choice of a particular medical intervention is likely to maximize health for all people with (or at risk for) a given disease. As a result, if medical practitioners are to be fully competent in the sense of knowing not only how to perform procedures but when and when not to do so, they must be able to support patients (and those who know and care about them) in weighing all of the many factors which bear upon the decision as to which, if any, medical interventions are likely to improve the person's health.     

Sex stereotypes and health care: The case of treatment for kidney failure

Differential health care is a potential source of differences in women's and men's health status. This paper discusses sex, race, and age differences in treatment for kidney failure. Women, blacks, and older persons are less likely to receive a kidney transplant (the optimal treatment for kidney failure) than are men, whites, and younger persons. Differences between women's and men's transplant rates have been increasing since 1978. Neither legitimate medical factors nor differential ability to pay explain these sex differences in treatment. Physicians appear to favor males when they select transplant candidates. One reason for this may be that physicians consider it more important to facilitate males' return to employment. Sex stereotypes may be an important influence on the allocation of scarce medical treatments, contributing to sex differences in health status.This paper was originally prepared for the annual meeting of the American Sociological Association in Atlanta, Georgia, August 1988. The research was supported in part by End Stage Renal Disease Network 20.     

Ethical Obligations and Clinical Goals in End-of-Life Care: Deriving a Quality-of-Life Construct Based on the Islamic Concept of Accountability Before God (Taklīf)

End-of-life medical decision making presents a major challenge to patients and physicians alike. In order to determine whether it is ethically justifiable to forgo medical treatment in such scenarios, clinical data must be interpreted alongside patient values, as well as in light of the physician's ethical commitments. Though much has been written about this ethical issue from religious perspectives (especially Christian and Jewish), little work has been done from an Islamic point of view. To fill the gap in the literature around Islamic bioethical perspectives on the matter, we derive a theologically rooted rubric for goals of care. We use the Islamic obligation for Muslims to seek medical treatment as the foundation for determining the clinical conditions under which Muslim physicians have a duty to treat. We next link the theological concept of accountability before God (taklīf) to quality-of-life assessment. Using this construct, we suggest that a Muslim physician is not obligated to maintain or continue clinical treatment when patients who were formerly of, or had the potential to be, mukallaf (the term for a person who has taklīf), are now not expected to regain that status by means of continued clinical treatment.     

Cognitive functioning as a contraindication to organ transplant surgery: Dilemmas encountered in medical decision making

A case is presented to illustrate some of the difficulties encountered when providing psychological consultation to evaluate the readiness of patients for pediatric heart-lung transplantation. The outcome of complex medical decision making can often hinge on information provided by the psychological consultant who is attempting to simultaneously serve the needs of the patient as well as the transplant team. Ethical dilemmas frequently arise when medical decision making is driven by limited health care resources and cost constraints. The utility of cognitive functioning as a variable in pediatric transplant decision making is discussed. Recommendations are made for further work in this area on both conceptual and empirical grounds to guide the integration of psychological information into transplant decision making as health care delivery continues to evolve in the future.     

Why treat the wounded? Warrior care, military salvage, and national health

Because the goal of military medicine is salvaging the wounded who can return to duty, military medical ethics cannot easily defend devoting scarce resources to those so badly injured that they cannot return to duty. Instead, arguments turn to morale and political obligation to justify care for the seriously wounded. Neither argument is satisfactory. Care for the wounded is not necessary to maintain an army's morale. Nor is there any moral or logical connection between the right to health care (a universal human right) and the duty to defend one's nation (a local political duty). Once badly wounded, soldiers enjoy the same right to medical care as any similarly ill or injured individual. National health care systems grasp this point and offer few additional health care benefits to veterans. In the United States, however, lack of universal health coverage skews the debate to focus on special entitlements for veterans without considering the health care rights that other citizens enjoy.     

La décision médicale et la relation médecin–patient en oncologie

The announcement of the cancer diagnosis and his treatment is an important moment in the set up of the doctor–patient relationship. The law of contracts has long governed the relationship between the doctor and the patient. But the legislature clearly demonstrated its will to consider the patient as full actor of his health, leaving the regime of medical decision, the shared decision. This shared decision is based on an obligation to inform the patient on his health and knows many exceptions (minor patients or adults under guardianship, emergency). In Oncology, the medical decision is a decision coordinated between doctors in the multidisciplinary consultation meetings. This decision is considered as a guarantee of the quality of the medical care. It does not preclude the time of the doctor–patient relationship.     

Physicians at the bedside: Practitioners' thoughts and actions regarding bedside allocation of resources

In the past, the study of the allocation of scarce medical resources centered around high-technology forms of health care such as the artificial heart, haemodialysis, et cetera. A major controversy considered in this study concerns the use of non-biomedical criteria (i.e., whether the social worth or financial status of a particular patient should dictate preferential medical treatment over another patient in times of shortage) in the allocation decision-making process. This article suggests that the study of allocation need not only focus on the dramatic realm of the high-tech, but should also concern itself with less dramatic everyday situations. Decisions concerning treatment based upon social worth and financial status are made almost daily by most practitioners; a thorough awareness of this phenomenon is prerequisite to the proper practice of medicine. Interviews with physicians disclose that most of these everyday allocation decisions are made tacitly, with non-biomedical criteria playing a role even in decisions that appear to have been prompted only by benign (even-guided) intentions.     

Impact of health beliefs, quality of life, and the physician-patient relationship on the treatment intentions of inflammatory bowel disease patients.

The research tested a model of treatment decision making in chronic illness that includes health beliefs, quality of life, and relationship with the physician (shared or not). Inflammatory bowel disease patients (N = 218) reported on their physician-patient relationship, general and disease-specific quality of life, and intentions to take a drug, for which perceived benefits and costs were manipulated. For more symptomatic patients, both costs and benefits predicted intentions; however, for less symptomatic patients, costs played a more important role. Physician recommendation predicted intention primarily among those who shared a decision-making relationship with their physician. Overall, the model accounted for 57.8% of the variance in medication-taking intention. Findings suggest that an integrative consideration of relationship factors, health beliefs, and health status may help explain treatment intentions among the chronically ill.     

Psychiatric symptoms associated with brain tumors: a clinical enigma

Patients in psychiatric settings may present with medical conditions, such as brain tumors, which may or may not be associated with neurological symptoms. In some cases, patients may only have psychiatric symptoms, such as mood changes (depression or mania), psychotic symptoms, panic attacks, changes in personality, or memory difficulties. Brain tumors may be detected in patients at their first presentation to mental health services or sometimes in patients with well-established psychiatric diagnoses. This article presents the case of a 29-year-old woman who was treated for >4 years for posttraumatic stress disorder and borderline personality traits, who developed depressive symptoms and memory difficulties. However, she did not develop any major neurological signs or symptoms. Brain imaging showed the presence of a left thalamic tumor, later confirmed as glioblastoma multiforme. She underwent surgical treatment and radiation therapy. With this we show that in some cases, brain tumors can be neurologically silent and only present atypical psychiatric symptoms. We emphasize the need for neuroimaging studies in a patient with atypical changes in mental status, even without neurological signs or symptoms.     

Obtaining informed consent for HIV antibody testing: the decision making process

All patients referring themselves for HIV antibody testing must receive pre-test counselling and must give their informed consent before testing can proceed. All patients being referred by their doctors for HIV antibody testing must also receive pre-test counselling and must give their informed consent before testing can proceed, except in very unusual circumstances. This paper is written primarily for medical and nursing staff who are considering referring a patient for testing and it is particularly relevant to those staff working in the field of mental health. This paper draws on professional guidelines and suggests that staff use a two-part decision making process. In the first part die referrer decides whether there are substantial clinical grounds for needing the test result immediately. If there are, the referral is made for pre-test counselling and testing, for example at the local Genito-Urinary Medicine (GU) clinic. In the second part experienced AIDS counsellors try to enable the patient to decide whether or not to proceed. If the patient is not able to understand or make a decision the AIDS counsellors, in consultation with other staff, will decide whether to proceed. Whatever the decision, it should be respected by professional staff.     

Does young adults’ preferred role in decision making about health,money, and career depend on their advisors’ leadership skills?

Few empirical data exist on how decision making about health differs from that in other crucial life domains with less threatening consequences. To shed light on this issue we conducted a study with 175 young adults (average age 19 years). We presented the participants with scenarios involving advisors who provided assistance in making decisions about health, money, and career. For each scenario, participants were asked to what extent they wanted the advisor to exhibit several leadership styles and competencies and what role (active, collaborative, or passive) they preferred to play when making decisions. Results show that decision making about health is distinct from that in the other domains in three ways. First, most of the participants preferred to delegate decision making about their health to their physician, whereas they were willing to collaborate or play an active role in decision making about their career or money. Second, the competencies and leadership style preferred for the physician differed substantially from those desired for advisors in the other two domains: Participants expected physicians to show more transformational leadership—the style that is most effective in a wide range of environments—than those who provide advice about financial investments or career. Finally, participants’ willingness to share medical decision making with their physician was tied to how strongly they preferred that the physician shows an effective leadership style. In contrast, motivation to participate in decision making in the other domains was not related to preferences regarding advisors’ leadership style or competencies. Our results have implications for medical practice as they suggest that physicians are expected to have superior leadership skills compared to those who provide assistance in other important areas of life.     

Primary Care and Clinical Psychology: Assessment Strategies in Medical Settings

There is ample evidence regarding medical-psychological comorbidity to consider clinical psychology as a viable component of health care services in medical settings. Psychologists can become valuable assets to primary care physicians who treat a high number of primary psychiatric cases as well as medical cases with secondary psychological symptoms. Psychologists who function in hospital-based clinics as well as affiliates with primary care (PC) offices can provide empirically supported assessment services that can make treatment more effective and efficient. Multiple studies indicate high prevalence rates of psychiatric patients in PC settings using various instruments. This paper reviews selected assessment tools that have established diagnostic validity and reliability that can be both strategic for patient care and useful to reinforce psychologist collaboration with primary care physicians (PCP).     

Ethics in health care and medical technologies

In this paper a case is used to demonstrate how ethical analysis enables health care professionals, patients and family members to make treatment decisions which ensure that medical technologies are used in the overall best interests of the patient. The claim is made and defended that ethical analysis can secure four beneficial outcomes when medical technologies are employed: (1) not allowing any medical technologies to be employed until the appropriate decision makers are identified and consulted; (2) insisting that medical technologies be employed not merely to promote the medical interests of the patient but rather on the basis of their ability to contribute to the overall well-being of the patient; (3) challenging caregivers to reflect on the dynamic interplay between their conscious and unconscious values and consequent determinations of what is in the patient's best interests; and (4) providing a justification for selected interventions which makes possible rational dialogue between caregivers espousing different viewpoints about treatment options.     

When adolescents "mismanage" their chronic medical conditions: an ethical exploration

Many adolescent patients with chronic medical conditions do not manage their illnesses very closely and often put themselves at risk for serious health complications. Setting aside cases of nonadherence that are due to practical difficulties involving the implementation of a management plan, a deeply problematic question remains. How should health care providers respond to adolescent patients who express a conscious and value-driven decision to pursue other goals and interests that are incompatible with their doctors' recommended directives? Using two guiding ethical principles, the "relevant difference principle" and the "principle of noninterference," as well as available empirical data on adolescent decision making and risk perception, the paper concludes that most adolescents ages 14 and older should be allowed to make self-determining decisions regarding the management of their chronic medical conditions.     

Measuring the quality of life: Why,how and what?

In this paper three questions concerning quality of life in medicine and health care are analysed and discussed: the motives for measuring the quality of life, the methods used in assessing it, and the definition of the concept. The purposes of the study are to find an ethically acceptable motive for measuring the quality of life; to identify the methodological advantages and disadvantages of the most prevalent current methods of measurement; and to present an approach towards measuring and defining the quality of life which evades the difficulties encountered and discussed. The analysis comprises measurements both in the clinical situation concerning individual patients and in research concerning whole populations. Three motives are found for evaluating the quality of human life: allocation of scarce medical resources, facilitating clinical decision making, and assisting patients towards autonomous decision making. It is argued that the third alternative is the only one which does not evoke ethical problems. As for the methods of evaluation, several prevalent alternatives are presented, ranging from scales of physical performance to more subtle psychological questionnaires. Clinical questionnaires are found to fail to provide a scientific foundation for universally measuring the quality of life. Finally, the question of definition is tackled. The classical distinction between need-based and want-based theories of human happiness is presented and discussed. The view is introduced and defended that neither of these approaches can be universally preferred to the other. The difficulty with the need approach is that it denies the subjective aspects of human life; whereas the problem of the want approach is that it tends to ignore some of the objective realities of the human existence. In conclusion, it is argued that the choice of methods as well as definitions should be left to the competent patients themselves — who are entitled, if they so wish, to surrender the judgement to the medical personnel. Technical factors as well as the requirements of respect for autonomy and informed consent support this conclusion.     

Psychosis in German prisoners: Comparison of the clinical appearance of psychotic disorder of an imprisoned population with a not detained community group

Surveys confirm risk factors for the incarceration of patients with psychosis including homelessness and comorbidity. There is also agreement that severe psychosis can lead to violence. Data describing prisoners with psychosis in Germany are scarce. We aimed to compare patients with psychosis in a prison hospital and patients with psychosis in a community hospital. Demographic data were collected, as well as comorbidity in the form of substance dependence and a psychiatric assessment using the German version of the 18-item Brief Psychiatric Rating Scale (BPRS) and the Positive and Negative Syndrome Scale (PANSS). In the prison hospital group more patients were homeless (17 versus 2%) and non-German (36 versus 4%). There were also more patients with substance dependence or abuse in the prison hospital group. The total scores of BPRS and PANSS were lower in the prison hospital group (BPRS, 43.8 versus 51.2; PANSS, 71.5 versus 83.7). We assume that social disintegration for mentally disturbed offenders prior to incarceration hindered effective treatment. To avoid further social disintegration and possible further deterioration of mental health status of released offenders, which may lead to reoffending after imprisonment, discharge management after release from prison should be improved.     

Determination of Weights for Health Related Quality of Life Indicators among Kidney Patients: A Fuzzy Decision Making Method

Health-Related Quality of Life (HRQoL) is one of the significant current discussions in the health fraternity. It encompasses multidimensional indicators and serves the purpose of evaluating health quality among patients. Patients’ perceptions of the impact of disease and treatment and the indicators such as physical, psychological, social function and well being are normally investigated. However there is no clear suggestion of which indicators contributed more than others. The arbitrary nature of HRQoL paves the way for fuzzy theory in evaluation of indicators. This paper describes the application of a fuzzy decision making method in ranking indicators of HRQoL among kidney patients. Four experts in health fraternity were selected as decision makers to elicit information regarding health related status of chronic kidney disease patients over eight HRQoL indicators. The decision makers were required to rate the regularity of experiencing health-related problems in linguistic judgment among the patients. The five linguistics variables were used as input data to a modified version of Fuzzy Simple Additive Weight decision making model. The modified six-step method was possible to tap the extent of decision makers’ opinions on the severity of HRQoL experienced by the patients. It is shown that the indicator of role-physical recorded the lowest problematic level while the indicator of mental health recorded the highest problematic level experienced by the patients. The ranking signifies the impact of the indicators to health quality specifically the chronic kidney disease patients.     

Predictors of depressive symptoms among breast cancer patients during the first year post diagnosis

It is important to identify predictors of psychological health among breast cancer patients that can be relatively easily identified by medical care providers. This article investigates the role of one class of such potential predictors: easily identified demographics that have potential social and/or practical implications. Specifically, we examined whether income, marital status, presence of children in the home, education, travel distance, age and rurality interact with time to predict psychological health over the first year post diagnosis. Two hundred and twenty five breast cancer patients receiving radiation treatment completed four surveys over the course of 13 months that included measures of both their physical health and depressive symptoms. The results revealed that women who were not married had children living in the home or had to travel long distances to receive radiation treatment reported higher levels of depressive symptoms across the entire study. Women with lower incomes reported increased depressive symptoms, but only after the completion of treatment. Younger women reported elevated depressive symptoms during initial treatment, but this effect dissipated after the completion of treatment. The current results suggest that demographic patient characteristics may indeed be useful in identifying both when and for whom depressive symptoms are particularly likely to be problematic.