A process of decision making by caregivers of family members with heart failure

Heart failure (HF) is a major cardiovascular problem and the number of people living with HF continues to climb. Throughout the illness continuum, patients and their family caregivers are involved in decision making. As the illness worsens and patients can no longer make decisions, decision making becomes the responsibility of their caregivers who may have little preparation for the role. The purpose of this grounded theory study was to examine how caregivers of family members with HF make decisions. A nonlinear decision-making process consisting of several actions was identified, which included actualizing; seeking input, information, or support; reflecting; choosing; evaluating; and validating the decision.     

Life-sustaining treatment decisions in the ICU for patients with ESLD: A prospective investigation

We conducted a prospective study in the ICU of life‐sustaining treatment and comfort care decisions over time in patients with end‐stage liver disease (ESLD) from the perspectives of patients, family members, and healthcare professionals. Six patients with ESLD, 19 family members, and 122 professionals participated. The overarching theme describing the decision‐making process was “on the train.” Four sub‐themes positioned patients and family members as passengers with limited control, unable to fully understand the decision‐making process. Findings suggest that including patients and family members in non‐immediate life‐saving decisions and verifying early on their understanding may help to improve the decision‐making process. © 2012 Wiley Periodicals, Inc. Res Nurs Health 35:518–532, 2012     

Metasynthesis: withdrawing life‐sustaining treatments: the experience of family decision‐makers

Aim. The present study was undertaken to synthesise findings from qualitative investigations of family participation in decisions to withdraw and/or withhold life‐sustaining treatment from a seriously ill family member. Background. As a consequence of increasing effectiveness and sophistication of available medical interventions, death is commonly preceded by a decision to withdraw or withhold potentially life‐sustaining treatments. These decisions take place in a bioethical context characterised by the preeminence of self‐determination, but patients are typically too ill to make their own decisions. Thus, family members are called upon to participate in these morally consequential decisions on the patient’s behalf. Design. Metasynthesis Method. Metasynthesis is a form of inquiry that provides for integration of qualitative studies’ findings to strengthen knowledge for practice and advance theoretical development. This metasynthesis was conducted using the constant comparative methods of grounded theory. Results. Family members engage in a process of participation in decision‐making that is comprised of three major categories: reframing reality, relating and integrating. Surrogates used both cues and information as they reframed their understanding of the patient’s status. Relationships with providers and with other family members powerfully influenced the decision‐making process. Integrating was characterised by reconciling and going forward. This part of the process has both intrapersonal and interpersonal aspects and describes how family decision‐makers find meaning in their experience and move forward in their lives. Conclusions. This synthesis provides a more comprehensive and empirically supported understanding of family members’ experiences as they participate in treatment decisions for dying family members. Relevance to clinical practice. This metasynthesis provides evidence to improve family care during treatment withdrawal/withholding decision‐making and a theoretical model that can be used to guide creation of clinical practice guidelines. Through increased understanding of family members’ experiences, clinicians can more effectively support family decision‐making processes.     

Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units

OBJECTIVE: To evaluate the opinions of intensive care unit staff and family members about family participation in decisions about patients in intensive care units in France, a country where the approach of physicians to patients and families has been described as paternalistic. DESIGN: Prospective multiple-center survey of intensive care unit staff and family members. SETTING: Seventy-eight intensive care units in university-affiliated hospitals in France. PATIENTS: We studied 357 consecutive patients hospitalized in the 78 intensive care units and included in the study starting on May 1, 2001, with five patients included per intensive care unit. INTERVENTIONS: We recorded opinions and experience about family participation in medical decision making. Comprehension, satisfaction, and Hospital Anxiety and Depression Scale scores were determined in family members. MEASUREMENTS AND MAIN RESULTS: Poor comprehension was noted in 35% of family members. Satisfaction was good but anxiety was noted in 73% and depression in 35% of family members. Among intensive care unit staff members, 91% of physicians and 83% of nonphysicians believed that participation in decision making should be offered to families; however, only 39% had actually involved family members in decisions. A desire to share in decision making was expressed by only 47% of family members. Only 15% of family members actually shared in decision making. Effectiveness of information influenced this desire. CONCLUSION: Intensive care unit staff should seek to determine how much autonomy families want. Staff members must strive to identify practical and psychological obstacles that may limit their ability to promote autonomy. Finally, they must develop interventions and attitudes capable of empowering families.     

Fit and misfit

This article presents an interpretive case analysis of an older adult's experience with treatment decision making for acute myeloid leukemia. Interview and observational data were compared and contrasted with key constructs in behavioral decision theory to analyze theoretical utility and fit. Decision making involved a complex interplay among the patient, treating clinicians, and family members. While some constructs of decision theory, such as trade-offs, avoidance-avoidance, and the certainty effect, showed utility for decision making in geriatric oncology, this case demonstrated that individual preferences for treatment may be expressed in quality of life preferences rather than a specific treatment decision. The Cage, a major theme in this case, represented the trap of two undesirable choices in treatment decision making, as well as the imprisoning consequence of aggressive medical treatment for advanced cancer. Further decision making research is needed to develop practice-level theory that can more effectively support and guide treatment decision making in geriatric oncology.     

Personalizing choices: Patients' experiences with making treatment decisions

Because little is known about the perceptions of patients who make health care decisions under potentially life-threatening conditions, a grounded theory approach was utilized to describe decision making from the patient's perspective. Eighteen respondents, aged 26 to 81, with diagnoses of heart disease, renal failure, or cancer were interviewed shortly after making a decision regarding treatment of their conditions and again about 1 month later. Respondents reported that their decisions to accept treatment were personalized to correspond with their views of themselves within the context of their life stories. Findings provide a basis for development of effective interaction and educational strategies for use with persons with potentially life-threatening conditions. © 1997 John Wiley & Sons, Inc. Res Nurs Health 20: 219–227, 1997     

Research Article: Perceptions of Japanese patients and their family about medical treatment decisions

Internationally, nurses and physicians are increasingly expected to undertake roles in communication and patient advocacy, including in Japan, where the reigning principle underlying medical ethics is in transition from paternalism to respect for patient autonomy. The study reports the results of a survey in two Japanese teaching hospitals that clarified the perspectives of 128 patients and 41 family members regarding their current and desired involvement in health decision‐making. The commonest process that was desired by patients and their family was for patients to make decisions after consultation with both the physician and their family. The decision‐making preferences for competent patients varied among the participants, who believed that families have a crucial role to play in health‐care decision‐making, even when patients are competent to make their own decisions. The findings will inform health professionals about contemporary Japanese health‐care decision‐making and the ethical issues involved in this process, as well as assist the future development of a culturally relevant model to support patients' preferences for ethical decision‐making.     

Family Abuse and Neglect: A Case-based Ethics Model

The ethical dilemma of caring for the patient from a multiproblem family with suspected domestic violence is discussed. An ethical decision making model that organizes patient data and encourages systematic analysis of the case is reviewed to address the responsibility of the emergency physician to intervene and the options available. The analysis explores specific issues related to mandatory reporting laws, discretionary reporting, and factors to be weighed in deciding the best action for protecting various members within a family when abuse is known or suspected.     

Perspectives of Family Members on Planning End-of-Life Care for Terminally Ill and Frail Older People

ContextAdvance care planning (ACP) is the process by which patients, together with their physician and loved ones, establish preferences for future care. Because previous research has shown that relatives play a considerable role in end-of-life care decisions, it is important to understand how family members are involved in this process.ObjectivesTo gain understanding of the involvement of family members in ACP for older people near the end of life by exploring their views and experiences concerning this process.MethodsThis was a qualitative research study, done with semistructured interviews. Twenty-one family members were recruited from three geriatric settings in Flanders, Belgium. The data were analyzed using the constant comparative method as proposed by the grounded theory.ResultsFamily members took different positions in the ACP process depending on how much responsibility the family member wanted to take and to what extent the family member felt the patient expected him/her to play a part. The position of family members on these two dimensions was influenced by several factors, namely acknowledgment of the imminent death, experiences with death and dying, opinion about the benefits of ACP, burden of initiating conversations about death and dying, and trust in health care providers. Furthermore, the role of family members in ACP was embedded in the existing relationship patterns.ConclusionThis study provides insight into the different positions of family members in the end-of-life care planning of older patients with a short life expectancy. It is important for health care providers to understand the position of a family member in the ACP of the patient, take into account that family members may experience an active role in ACP as burdensome, and consider existing relationship patterns.     

Conserving the vitality of suffering: addressing family constraints to illness conversations

When persons are confronted with life-threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and family suffering following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses.     

神经内科ICU患者家属疾病不确定感与决策冲突的相关性分析

目的：探讨神经内科ICU患者家属疾病不确定感与决策冲突的相关性。方法：采用疾病不确定感家 属量表、家属决策冲突量表对156例神经内科ICU患者家属评分并进行相关性分析。结果：神经内科ICU 患者家属疾病不确定感得分为（89.17±17.13）分,决策冲突得分为（31.60±6.17）分;决策冲突与疾病不确定 感呈正相关（r=0.359,P＜0.05）。结论：神经内科ICU患者家属存在决策冲突,疾病不确定感处于中水平,决 策冲突与疾病不确定感呈正相关。     

Measuring family satisfaction with care in the intensive care unit: the development of a questionnaire and preliminary results

Purpose: To develop and test the feasibility of administering a questionnaire to measure family members' level of satisfaction with care provided to them and their critically ill relative. Materials and Methods: To develop the questionnaire, existing conceptual frameworks of patient satisfaction, decision making, and quality of end-of-life care were used to identify important domains and items. We pretested the questionnaire for readability, clarity, and sensibility in 21 family members and 16 professionals. To assess validity, we measured the correlation between satisfaction with overall care and satisfaction with decision making. To assess the reliability of the questionnaire, we administered the questionnaire to next of kin of surviving patients on discharge and 7 to 10 days later. Results: Questionnaires were mailed out to 33 family members of nonsurvivors; 24 were returned completed but only 22 (66%) were usable.Twenty-five family members of eligible surviving critically ill patients participated in the test-retest part of this study. Of the 47 respondents, 84% were very satisfied with overall care and 77% were very satisfied with their role in the decision making.There was good correlation between satisfaction with overall care and satisfaction with decision making (correlation coefficient = .64). The assessment of overall satisfaction with care was shown to be reliable (correlation coefficient = .85). Conclusions: This questionnaire has some measure of reliability and validity and is feasible to administer to next of kin of critically ill patients. Copyright © 2002 by W.B. Saunders Company     

Professional relationships in palliative care decision making

Background  Decision making in the context of palliative care is particularly complex given the unpredictable illness trajectories experienced by patients and the number of individuals who may be part of decision-making processes. This study aimed to describe the significant issues that influence the processes of care decision making, from the perspective of patients with advanced illness. Methods  Patients (14), family members (7) and health professionals (18) were interviewed and field observations (100 h) of decision-making practices were undertaken in two Australian palliative care services. A systematic approach using grounded theory to collect and analyse the data was used to develop a theory of decision making from the patient’s perspective. Results  The main issue experienced by palliative care patients was identified as a lack of involvement in decision making. One of the significant factors affecting the decision process is the type of relationship with health professionals that patients believe enhances their involvement in decision making. This was determined by the manner and focus of the health professional, their trustworthiness as well as the healthcare culture and environment. This paper provides a greater understanding of the perspective of patients in relation to their involvement in decisions related to palliative care.     

Decision making and prostate cancer treatment selection: a review

OBJECTIVES: To review the issues surrounding decision making regarding prostate cancer treatment. DATA SOURCES: Journal articles, abstracts, and selected findings from one prospective grounded theory research study. CONCLUSIONS: Multiple factors are involved in the selection of prostate cancer treatment, such as individual disease-specific data, age, personal values, vicarious and personal cancer experiences, and the physician-patient relationship. IMPLICATIONS FOR NURSING PRACTICE: Accurate information regarding each treatment option delivered by experts in their respective fields is necessary for informed decision making. A more multidisciplinary approach regarding discussion of treatment options is needed. Nurses play a pivotal role in facilitating discussion among family members and assisting patients to make a decision that balances their personal values with accurate information regarding treatment outcomes.     

Chinese familial tradition and Western influence: a case study in Singapore on decision making at the end of life

Decision making for an incompetent patient at the end of life is difficult for both family members and physicians alike. Often, palliative care teams are tasked with weaving through opinions, emotions, and goals in search for an amenable solution. Occasionally, these situations get challenging. We present the case of an elderly Chinese Singaporean with metastatic cancer, whose family and physicians had conflicting goals of care. The former was adamant on treating the patient's disease with an untested drug, whereas the latter aimed to treat his symptoms with more conventional medication. Drug-drug interactions prevented treatment with both. Beginning with a discussion of the patient's best interest, we delve into the Singaporean context to show how culture affects medical decision making. Confucianism and filial piety are the values on which this family's workings were based. In an analysis of what this entails, we attempt to explain the significant and assertive family involvement in the decision-making process and their insistence on using novel medications, having exhausted conventional interventions. Within this mix were Western influences, too. Through the Internet, family members have become more informed and empowered in decision making, wresting the traditional paternalistic role of physicians in favor of "patient autonomy." An understanding of such dynamic facets will help better tailor culturally appropriate approaches to such complex situations.     

222名颅内肿瘤患者家属决策冲突现状及影响因素分析

目的 调查颅内肿瘤患者家属决策冲突现状,分析其影响因素。方法 采用便利抽样法,于2021年9月—2022年2月选取乌鲁木齐市3所三级甲等医院符合纳入标准的222名颅内肿瘤患者家属作为研究对象。采用一般资料调查表、决策冲突量表、领悟社会支持量表和自我效能量表进行调查。采用多重线性回归分析颅内肿瘤患者家属决策冲突的影响因素。结果 本组颅内肿瘤患者家属决策冲突总分为（34.74±14.38）分,多重线性回归分析结果显示,患者肿瘤类型及患者家属经济压力、与医护讨论患者病情频率、领悟社会支持和自我效能进入回归方程（P<0.05）,共解释总变异的33.5%。结论 本组颅内肿瘤患者家属决策冲突处于中等偏下水平,患者肿瘤类型及患者家属经济压力、与医护讨论患者病情频率、领悟社会支持和自我效能是决策冲突的影响因素。医护人员应借助个性化、针对性的医疗决策辅助工具,改善患者家属的决策信心,降低其决策冲突水平。     

The ageing family in crisis: assessment and decision-making models

The purpose of this paper is to present a multidisciplinary model for use with elderly families in crisis and decision making. The application of systems in family assessment theory is outlined in order to understand the complexities of family assessment and decision making. A schematic family assessment and decision-making model is discussed. These models identify what the problem is, the family structure and supports, and possible interventions and evaluation. Ineffective processing strategies such as regression and premature closure are reviewed, and strategies for effective decision making are outlined.     

ICU患者家属参与决策的现况研究

目的 了解ICU患者家属在决策中期望参与程度和实际参与情况，并分析决策参与期望的影响因素。方法 采用一般资料调查表和决策参与期望量表，对杭州市某三甲医院的100名ICU患者家属进行调查。结果 在决策参与期望的调查中，46.0%的家属选择合作型，35.0%的家属选择被动型，19.0%的家属选择主动型。家属参与决策的期望和实际情况存在差异，期望参与决策的程度高于实际参与水平（χ2=14.894，P<0.05），两者一致性检验的Kappa值为0.272，符合率为54.0%。多元有序Logistic回归分析结果显示，家属的年龄、文化程度和性格是决策参与期望的主要影响因素。结论 近半数家属在决策中扮演了与期望不一致的参与角色，建议医护人员在决策前评估家属的决策参与期望水平，给予个性化的沟通方式，实施与之匹配的决策模式。     

Differences in health values among patients, family members, and providers for outcomes in schizophrenia

OBJECTIVE: The objectives of this study were to determine whether there are important differences in how patients, family members, and health care providers (HCPs) value health outcomes in schizophrenia and to assess the degree to which such differences, if they exist, could adversely affect clinical and policy decision making. METHODS: Participants viewed videotaped depictions of simulated patients with mild and moderate symptoms of schizophrenia, with and without a common adverse drug effect (pseudoparkinsonism), and then provided standard gamble and visual analog scale ratings of desirability of these states. SUBJECTS: A convenience sample of unrelated patients (n = 148), family members of patients (n = 91), and HCPs (nurses, psychologists, doctors of pharmacy, and doctors of medicine; n = 99) was drawn from geographically and clinically diverse environments. RESULTS: Patients' and family members' utilities for health states averaged 0.1 to 0.15 units higher than those of HCPs (P <0.002 for differences between groups, ANOVA for multiple observations). The disutility of adverse drug effects was less for health professionals than patients and family members (P = 0.008). Health professionals tended to prefer states with mild symptoms with extrapyramidal side effects to states with moderate symptoms. Patients and family members found these states equally preferable (P <0.007 for differences between groups). CONCLUSIONS: There are systematic differences in values for health outcomes between patients and HCPs with regard to states with adverse effects of antipsychotic drugs. Family members of patients in general had values that were more similar to those of patients than were those of health professionals. The results emphasize the importance of participation by patients (or family member proxies) in clinical decision making and guideline development.     

Caring for the family of the critically ill patient

Family's needs and considerations are an essential component of intensive care unit (ICU) care. Family satisfaction is related to clinician communication and decision making. Indeed, timely, honest communication is vital to the psychosocial health and satisfaction of the family. Conflict often arises within the family and between the family and the clinicians, over decision making. Again, good communication skills are critical to family satisfaction with decision making and comfort with the care received. Family members have numerous psychosocial changes, and may experience depression,anxiety, or anticipatory grief while their family member is dying in the ICU. Awareness of these conditions, providing support to the families, and allowing family access to the dying individual can assist with meeting the family's desire to see their family member have a peaceful death.