Health innovations in patient decision support: Bridging the gaps and challenges

Patient decision aids (PDAs) help to support patients in making an informed and value-based decision. Despite advancement in decision support technologies over the past 30 years, most PDAs are still inaccessible and few address individual needs. Health innovation may provide a solution to bridge these gaps. Information and computer technology provide a platform to incorporate individual profiles and needs into PDAs, making the decision support more personalised. Health innovation may enhance accessibility by using mobile, tablet and Internet technologies; make risk communication more interactive; and identify patient values more effectively. In addition, using databases to capture patient data and the usage of PDAs can help: developers to improve PDAs’ design; clinicians to facilitate the decisionmaking process more effectively; and policy makers to make shared decision making more feasible and cost-effective. Health innovation may hold the key to advancing PDAs by creating a more personalised and effective decision support tool for patients making healthcare decisions.     

国外医患沟通质量评价量表研究综述

通过对国外常用的评价量表进行梳理,把当前常用的量表分为两大类：过程质量评价和结果质量评价量表,对两大类量表又进行了细化分类,并介绍了几种常用量表：医生沟通行为评价量表;沟通移情性评价量表;患者参与决策评价量表;心理状态改变评价量表;需求满足量表;患者决策评价量表。希望这些量表的设计方法、使用方法、量表内容所反映出的理念能对我国医患沟通的研究起到一定的借鉴和参考作用,进而设计出适合我国国情的医患沟通质量评价量表。     

The living will. Help or hindrance?

The living will is a statement that directs physicians to act in certain ways during a patient's terminal phase of illness. The physician is instructed not to take measures that would prolong the life of the patient. The living will is designed to promote patient autonomy while removing onerous decision making from physicians and the patients' families. Experience with the living will indicates that it can either help or hinder clinical decision making. When appropriately implemented, the living will can perform its intended functions. When vague in terminology or applied to patients with uncertain prognoses, the living will can promote medical staff confusion. Adequate communication between patient and physician can improve the utility of the living will. Other considerations affecting the applications of the living will are discussed in detail.     

Withdrawal of life support: intensive caring at the end of life

The technology and expertise of critical care practice support patients through life-threatening illnesses. Most recover; some die quickly; others, however, linger--neither improving nor acutely dying, alive but with a dwindling capacity to recover from their injury or illness. Management of these patients is often dominated by the question: Is it appropriate to continue life-sustaining therapy? Patients rarely participate in these pivotal discussions because they are either too sick or too heavily sedated. As a result, the decision often falls to the family or the surrogate decision maker, in consultation with the medical team. Decisions of such import are emotionally stressful and are often a source of disagreement. Failure to resolve such disagreements may create conflict that compromises patient care, engenders guilt among family members, and creates dissatisfaction for health care professionals. However, the potential for strained communications is mitigated if clinicians provide timely clinical and prognostic information and support the patient and family with aggressive symptom control, a comfortable setting, and continuous psychosocial support. Effective communication includes sharing the burden of decision making with family members. This shift from individual responsibility to patient-focused consensus often permits the family to understand, perhaps reluctantly and with great sadness, that intensive caring may involve letting go of life-sustaining interventions.     

‘End-of-life' decision making within intensive care - objective,consistent, defensible?

OBJECTIVE: To determine the objectivity, consistency and professional unanimity in the initiation, continuation and withdrawal of life-prolonging procedures in intensive care--to determine methods, time-scale for withdrawal and communication with both staff and relatives--to explore any professional unease about legality, morality or professional defensibility. DESIGN: A structured questionnaire directed at clinical nurse managers for intensive care. SETTING: All intensive care units in the Yorkshire region. RESULTS: The survey reported a lack of consistency and objectivity in decision making in this area, with accompanying unease amongst staff. CONCLUSIONS: There is a need to work towards more consistent care, both before and during admission, for the protection of the individual patient and to allow rational assessment of intensive care need. Comprehensive audit should lead to objective defensible decisions and facilitate informed choice. More open debate and better communication should minimise this issue as a source of stress amongst staff in intensive care.     

Evaluation and ethical review of a tool to explore patient preferences for information and involvement in decision making

AIM: To improve clinical and ethical understanding of patient preferences for information and involvement in decision making. OBJECTIVES: To develop and evaluate a clinical tool to elicit these preferences and to consider the ethical issues raised. DESIGN: A before and after study. SETTING: Three UK hospices. PARTICIPANTS: Patients with advanced life-threatening illnesses and their doctors. INTERVENTION: Questionnaire on information and decision-making preferences. MAIN OUTCOME MEASURES: Patient-based outcome measures were satisfaction with the amount of information given, with the way information was given, with family or carer information, and confidence about future decision making. Doctor-based outcome measures were confidence in matching information to patient preference, matching family or carer communication to patient preference, knowing patient preferences and matching future decision making with patient preference. RESULTS: Of 336 admissions, 101 patients (mean age 67.3 years, 47.5% men) completed the study (control, n = 40; intervention, n = 61). Patient satisfaction with the way information was given (chi2 = 6.38, df = 2, p = 0.041) and family communication (chi2 = 14.65, df = 2, p < 0.001) improved after introduction of the tool. Doctor confidence improved across all outcome measures (all p values < 0.001). CONCLUSIONS: Patient satisfaction and doctor confidence were improved by administering the questionnaire, but complex ethical issues were raised by implementing and applying this research. The balance of ethical considerations were changed by advanced life-threatening illness, because there is increased risk of harm through delivery of information discordant with the patient's own preferences. The importance of truly understanding patient preferences towards the end of life is highlighted by this study.     

Doctor-patient relationship: from medical paternalism to enhanced autonomy

For centuries, physicians have been allowed to interfere and overrule patient's preferences with the aim of securing patient benefit or preventing harm. With the radical rise in emphasis on individual control and freedom, medical paternalism no longer receives unquestioned acceptance by society as the dominant mode for decision-making in health care. But neither is a decision-making approach based on absolute patient autonomy a satisfactory one. A more ethical and effective approach is to enhance a patient's autonomy by advocating a medical beneficence that incorporates patients' values and perspectives. This can be achieved through a model for shared decision making, acknowledging that though the final choices reside ultimately in patients, only through physician beneficence can the patient be empowered to make meaningful decisions that serve them best. For such a model to function effectively, the restoration of trust in doctor-patient relationship and the adoption of patient-centred communication are both crucial.     

医患参与式医疗决定的方法及应用

探讨医患沟通的方法和技术对临床医疗和医学教育都具有重要意义。医患参与式医疗决定(Shared Decision)是医患沟通的重要内容之一。我们总结了80例恶性血液病患者医疗决定产生模式及过程,对实施参与式决定的方法和技巧作了介绍。     

浅谈假说在临床决策过程中的作用

临床决策是医疗实践过程中的中心环节,直接关系到患者的治疗效果。临床医师要高度重视临床决策过程,而决策方案的形成是通过建立诊断假说、检验诊断假说、评价诊断假说3个程序达到的。因而临床医师要充分地利用假说这一逻辑思维方法,实现临床决策的优化。     

Q方法在专家经验分类及理解中应用的可行性分析

The Q method, combining qualitative and quantitative methods, refers to the qualitative analysis of Q-sorts based on quantitative techniques. It is used to research individual subjective experience, analyzing consensus and divergence to identify and categorize subjects＇ viewpoints. The sorting process is completely performed by the subjects, independent of study researchers. The Q method in medical research has been applied in many fields, including nursing care, clinical studies, doctor and patient＇s perceptions, health evaluation and decision making. The authors used the Q method to research Chinese medicine （CM） group decision making, exploring its practical feasibility in this important field. Four primary domains are addressed： （1） integration of expert opinion; （2） expert classification; （3） ascertaining the entire viewpoint orientation of a certain type of expert; and （4） comparison of expert opinion using an additional perspective. The essence of the Q method caters to the CM thinking model and should be introduced into CM and explored more deeply.     

Decision-making for long-term tube-feeding in cognitively impaired elderly people

BACKGROUND: The decision to start long-term tube-feeding in elderly people is complex. The process by which such decisions are made is not well understood. The authors examined the factors involved in the decision to start long-term tube-feeding in cognitively impaired older people from the perspective of the substitute decision-maker. METHODS: A telephone survey was administered to the substitute decision-makers of tube-fed patients over 65 years old in chronic care facilities in Ottawa. Subjects were recruited from September 1997 to March 1998. Patients were incapable of making their own decisions about tube-feeding. Data were collected on sociodemographic factors, patients' health status, advance directives, communication between the substitute decision-maker and the health care team, and the decision-maker's perceived goals of tube-feeding and satisfaction with the decision regarding tube-feeding. RESULTS: Among the 57 cases in which the patient was eligible for inclusion in the study, 46 substitute decision-makers agreed to participate. Most of the patients had not given advance directives, and only 26 substitute decision-makers (56.5%) were confident that the patient would want to be tube-fed. A physician spoke with the substitute decision-maker about tube-feeding for 15 minutes or less in 17 cases (37.0%) and not at all in 13 cases (28.3%). Most of the substitute decision-makers (39 [84.8%]) felt that they understood the benefits of tube-feeding, but less than half (21 [45.7%]) felt that they understood the risks. The prevention of aspiration and the prolongation of life were the medical benefits most often cited as reasons for tube-feeding. Just over half (24 [52.2%]) of the substitute decision-makers felt that they had received adequate support from the health care team in making the decision. Substitute decision-makers of patients less than 75 years old were more likely than those of older patients to feel supported (odds ratio [OR] 4.2, 95% confidence interval [CI] 1.0-17.9). Compared with the physician's making the decision independently, substitute decision-makers felt more supported if they primarily made the decision (OR 16.5, 95% CI 2.7-101.4) or if they made the decision together with the physician (OR 5.3, 95% CI 1.0-27.9). Most (20 [43.5%]) of the substitute decision-makers did not feel that tube-feeding improved the patient's quality of life, and less than half (21 [45.7%]) indicated that they would choose the intervention for themselves. INTERPRETATION: The substitute decision-making process for tube-feeding in cognitively impaired elderly people is limited by a need for advance directives, lack of confidence in substituted judgement and poor communication of information to the substitute decision-maker by the health care team.     

A critical look at nursing observations

Our experience has suggested that not only do nurses on hospital wards waste time making too many unnecessary clinical observations, but that it is very difficult to persuade them to modify the pattern of their practice. We therefore conducted a survey by questionnaire among trained nurses in one health district of their everyday ward practice and attitudes to clinical observations. This showed that whilst a majority of nurses questioned believe in the importance of routine observations for patient care, there is a lack of consistency in the criteria and communication procedures used that must seriously limit the value of the information obtained by the individual nurse. We believe that uncritical faith in routine observations is a barrier to rationalizing procedures to optimize efficient use of the professional skills of ward nurses in this regard. There is need for more thought to be given to the problem and in particular it is important that doctors play a more active role in decision making.     

A critical look at nursing observations

Our experience has suggested that not only do nurses on hospital wards waste time making too many unnecessary clinical observations, but that it is very difficult to persuade them to modify the pattern of their practice. We therefore conducted a survey by questionnaire among trained nurses in one health district of their everyday ward practice and attitudes to clinical observations. This showed that whilst a majority of nurses questioned believe in the importance of routine observations for patient care, there is a lack of consistency in the criteria and communication procedures used that must seriously limit the value of the information obtained by the individual nurse. We believe that uncritical faith in routine observations is a barrier to rationalizing procedures to optimize efficient use of the professional skills of ward nurses in this regard. There is need for more thought to be given to the problem and in particular it is important that doctors play a more active role in decision making.     

Grasping the nettle--what to do when patients withdraw their consent for treatment: (a clinical perspective on the case of Ms B)

Withdrawal of active treatment is common in medical practice, especially in critical care medicine. Usually, however, it involves patients who are unable to take part in the decision making process. As the case of Ms B shows, doctors are sometimes reluctant to withdraw active treatment when the patient is awake and requesting such a course of action. In theory, having a competent patient should facilitate clinical decision making, so where does the problem arise? It is argued that latent medical paternalism may come to the surface when doctors are asked by patients to follow a course of action which is in conflict with their own perspective.     

医护人员对重性精神病患者参与治疗的态度和实施现状

目的探讨精神科医护人员对重性精神病患者参与治疗的态度和实施现状。方法将宝鸡市康复医院内的120名医护人员作为调查对象,应用自制的调查问卷对医护人员关于重性精神病患者参与治疗的态度和实施进行调查。应用统计学方法分析医院医护人员对重性精神病患者参与治疗的态度和实施现状。结果 69.3%的调查对象对"患者参与治疗"的概念熟悉,有7.0%的调查对象对"充权"概念熟悉。对患者参与诊断报告、药物使用决策、治疗过程的支持态度分别占调查对象的56.1%、69.3%、41.2%;在具体实施上支持的分别占调查对象的43.9%、24.6%、24.6%。医护人员对重性精神病患者参与治疗的实施明显低于态度(P<0.01)。医护人员对患者参与治疗的知识、态度和实施与其受教育程度、年龄及工作年限呈负相关(P<0.05)。结论精神科医护人员对重性精神病患者参与治疗支持的态度较高,但在实施上力度不足。医护人员对患者参与治疗的重视程度与其受教育程度、年龄及工作年限有关。     

Resolving disagreements in the patient-physician relationship: tools for improving communication in managed care.

Managed care uses financial incentives and restrictions on tests and procedures to attempt to influence physician decision making and limit costs. Increasingly, the public is questioning whether physicians are truly making decisions based on the patient's best interest or are unduly influenced by economic incentives. These circumstances lead to the potential for disagreements and conflict in the patient-physician relationship. We convened a group of individuals in October 1998, including patient representatives, leaders from health care organizations, practicing physicians, communication experts, and medical ethicists, to articulate the types of disagreements emerging in the patient-physician relationship as a result of managed care. We addressed 3 specific scenarios physicians may encounter, including allocation, illustrated by a patient who is referred to a different ophthalmologist based on a new arrangement in the physician's group; access, illustrated by a patient who wishes to see his own physician for a same-day visit rather than a nurse specialist; and financial incentives, illustrated by a patient who expects to have a test performed and a physician who does not believe the test is necessary but is afraid the patient will think the physician is not ordering the test because of financial incentives. Using these scenarios, we suggest communication strategies that physicians can use to decrease the potential for disagreements. In addition, we propose strategies that health plans or physician groups can use to alleviate or resolve these disagreements.     

Science, ethics, and the making of clinical decisions. Implications for risk factor intervention

Recent improvements in the clinical care of individual patients are rooted in advances in two distinct fields of modern medicine: biomedical research and clinical ethics. In this article, we review the differing roles of these two disciplines in guiding decision making for individual patients. Particular attention is placed on decisions involving risk factor intervention, using the common problem of mild hypertension as an illustration. Both the importance and the limitations for decision making of some recently published clinical trials are reviewed. Differences in interpretation of these trials are a source of major disputes about the proper threshold for medical intervention. The ethical aspects of treatment decisions are then reviewed, with particular emphasis on the doctrine of informed consent and on the role of patient participation in treatment decisions. Finally, new directions for clinical research are suggested that may yield a more complete scientific basis for treatment decisions and that may aid in fulfilling the ethical ideals that underlie the physician-patient relationship.     

Clinical informatics during the COVID-19 pandemic: Lessons learned and implications for emergency department and inpatient operations

In response to a pandemic, hospital leaders can use clinical informatics to aid clinical decision making, virtualizing medical care, coordinating communication, and defining workflow and compliance. Clinical informatics procedures need to be implemented nimbly, with governance measures in place to properly oversee and guide novel patient care pathways, diagnostic and treatment workflows, and provider education and communication. The authors’ experience recommends (1) creating flexible order sets that adapt to evolving guidelines that meet needs across specialties, (2) enhancing and supporting inherent telemedicine capability, (3) electronically enabling novel workflows quickly and suspending noncritical administrative or billing functions in the electronic health record, and (4) using communication platforms based on tiered urgency that do not compromise security and privacy.     

Evidence-based medicine: useful tools for decision making

Evidence-based medicine (EBM) integrates clinical experience and patient values with the best available research information. There are four steps in incorporating the best available research evidence in decision making: asking answerable questions; accessing the best information; appraising the information for validity and relevance; and applying the information to patient care. Applying EBM to individual patients requires drawing up a balance sheet of benefits and harms based on research and individual patient data. The most realistic and efficient use of EBM by clinicians at the point of care involves accessing and applying valid and relevant summaries of research evidence (evidence-based guidelines and systematic reviews). The future holds promise for improved primary research, better EBM summaries, greater access to these summaries, and better implementation systems for evidence-based practice. Computer-assisted decision support tools for clinicians facilitate integration of individual patient data with the best available research data.     

Withholding life prolonging treatment,and self deception

OBJECTIVES: To compare non-treatment decision making by general practitioners and geriatricians in response to vignettes. To see whether the doctors' decisions were informed by ethical or legal reasoning. DESIGN: Qualitative study in which consultant geriatricians and general practitioners (GPs) randomly selected from a list of local practitioners were interviewed. The doctors were asked whether patients described in five vignettes should be admitted to hospital for further care, and to give supporting reasons. They were asked with whom they would consult, who they believed ought to make such decisions, and whether the relatives' preferences would influence their decision making. MAIN MEASURES: To analyse the factors influencing the doctors' decisions not to admit otherwise terminally ill patients to hospital for life prolonging treatment. RESULTS: Seventeen GPs and 18 geriatricians completed the interview. All vignettes produced strong concordance in decision making between both groups. Ten per cent of the doctors would provide life prolonging treatment to patients with severe brain damage. Most would admit a surgical patient regardless of age or disability. Medical reasons were largely used to explain decision making. The wishes of relatives were influential and resource considerations were not. There was variability regarding decision making responsibility. CONCLUSIONS: Little attempt was made to link decision making with ethical or legal concepts and there may have been non-recognition, or denial, of the ethical consequences of failure to admit. The process of decision making may involve deception. This may be conscious, because of the illegality of euthanasia, or unconscious (self deception), because of deepseated medical and societal reluctance to accept that intentionally withholding life prolonging treatment may equate with intentionally causing death.