Electroconvulsive Therapy: The Struggles in the Decision-Making Process and the Aftermath of Treatment

The perceptions of patients and their family members about electroconvulsive therapy (ECT) are crucial to understanding the meaning attached to having ECT and the impact it has on quality of life. Thus, in this qualitative study, patients and their family members described their perceptions of having electroconvulsive therapy (ECT). The experience occurred in two distinct periods in the patient's life: making the decision to have ECT and the physical and emotional aftermath of treatment. One of the most important themes in the study was a need for patients and families to be better informed about the risks of ECT.     

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.     

Family as a whole: elective surgery patients’ perception of the meaning of family involvement in decision making

Aims and objectives. This study aimed to explore patient perception of the meaning of family involvement in elective surgery decision making in Taiwan. Background. Informed consent is based on respecting patient autonomy. However in cultures where family plays a key role in medical decision making, a patient’s perspective of family involvement has not been fully investigated. Design and methods. Based on a phenomenological approach, this study conducted semistructured interviews to elicit the experiences of 10 elective surgery patients in southern Taiwan who had family present during their surgery decision making. An adapted version of Colaizzi’s (1978) method was used to analyse narratives. Results. Three themes emerged from the elective surgery patients’ perception of the meaning of family involvement in their surgery decision‐making process: (1) Primacy of family well‐being, (2) family as information broker, and (3) family as patient advocate. Patients articulated reciprocal relationships amongst family members, and they expressed overall family well‐being as their ultimate concern when making their treatment decision. The essence of the elective surgery patients’ perception of the meaning of family involvement in decision making was ‘family as a whole’. Conclusions. Patients’ concern for overall family well‐being and their perspective that family plays a supportive role in transmitting information and acting as patient advocate during the decision‐making process may both enhance and restrict individual patient autonomy. In cultures where family is central in decision making, appropriately involving the family in medical decisions should not be overlooked. Relevance to clinical practice. Understanding and acknowledging the important roles of family in medical decision making from the patients’ perspective can enable health professionals to more effectively communicate with patients and their family. Then, health professionals can empower the individual who is making the medical decision based on his or her own needs.     

A Lesson in Spirituality

Understanding spirituality during palliative care training is not easy. It slowly unravels itself when one starts caring for patients and meeting their caregivers. One such experience in the hospice has been described in this narrative. A person with advanced incurable cancer is initially in severe distress. Over time, he slowly comes to terms with the situation and eventually, a question from his illiterate wife—an insightful question about any last wish—brings out his desire to have certain religious rituals that were alien to his own religion. After his death, the family members concur with his last wish and also indulge in some religious rituals of their own choice. This story reaffirms that the essence of spirituality is the coexistence of harmony and humanity.     

Spirituality and meaning in supportive care: spirituality- and meaning-centered group psychotherapy interventions in advanced cancer

Existential and spiritual issues are at the frontier of new clinical and research focus in palliative and supportive care of cancer patients. As concepts of adequate supportive care expand beyond a focus on pain and physical symptom control, existential and spiritual issues such as meaning, hope and spirituality in general have received increased attention from supportive care clinicians and clinical researchers. This paper reviews the topics of spirituality and end-of-life care, defines spirituality, and suggests measures of spirituality that deal with two of its main components: faith/religious beliefs and meaning/spiritual well-being. These two constructs of spirituality are reviewed in terms of their role in supportive care. Finally, a review of existing psychotherapeutic interventions for spiritual suffering are reviewed and a novel meaning-centered group psychotherapy for advanced cancer patients is described.     

Meaningful lives: elders in treatment for depression

This study used a qualitative approach and was conducted to gain insights into the lives of elders with depression that could eventually lead to improvements in treatment strategies for this population. Twenty elders described a typical day in their lives. Using a multistep analysis of the interviews, six themes emerged: independence, spirituality, family relationships, depression, medical comorbidities, and motivation. A perspective of the process of elders finding meaning in their lives was explicated such that characteristics of independence, motivation, and spirituality enabled these elders to identify their need for treatment and to cope with their comorbidities. During treatment, these elders began to appreciate their experiences of social and family relationships and began to be able to appreciate the meaning inherent in their lived experience. Developing the role of the clinician as coordinator of health care and the appropriateness of MI as a treatment strategy were presented as possible avenues to improving treatment for elders with depression.     

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     

Patterns of spirituality in persons with advanced HIV disease

This study was conducted to explicate the role of spirituality in dealing with the many struggles of advanced HIV disease. The research question that guided the study was: How is spiritual meaning structured in advanced stages of HIV disease? Published articles have lacked sound conceptions of spirituality that would allow it to be described apart from religion as a concept within humanistic science. Qualitative methodological assumptions were derived from interpretive interactionism. The spiritual experiences of 10 men and women in advanced-stage (symptomatic) HIV disease who self-identified that they had either spiritual or religious experiences that had helped them cope with HIV disease were interpreted. Data were collapsed, over three iterations, into three major themes to build the meaning of spirituality in HIV. Extracted themes were: purpose in life emerges from stigmatization; opportunities for meaning arise from a disease without a cure; and after suffering, spirituality frames the life. © 1998 John Wiley & Sons, Inc. Res Nurs Health 21: 143–153, 1998     

Comparing cognitive load levels among family members of the critically ill exposed to electronic decision aids

Cognitive load predicts one's ability to process information and learn from decision support interventions. The present study compared intrinsic and extraneous cognitive load levels resulting from exposure to two different electronic decision aids. A convenience sample of ninety-seven surrogate decision makers for critically ill patients were randomly assigned to receive either a single dose of a video-based or avatar-based decision aid. Intrinsic and extraneous cognitive load levels among recipients of the video-based decision support resource were lower than recipients of the avatar-based decision support resource. After controlling for age, the observed differences in intrinsic cognitive load were not significantly different, whereas the observed differences in extraneous cognitive load remained. Extraneous cognitive load is a modifiable factor to consider for future developers of decision support interventions that may determine the efficacy of efforts to support patients and family members with decision making.     

Decision making at end of life among Japanese American families

This exploratory study describes decision making at end of life among Japanese American families. Using qualitative methods including a one-time, semistructured interview, 16 Japanese American family participants described their experiences with the death of 22 family members. A grounded theory analysis led to the development of a model of a process that reflected the influence of age-cohort generational differences and health care providers' involvement. The model also included four dimensions of family understanding. The four dimensions were awareness of the seriousness of the family members' condition, decision making about life-sustaining treatment, readiness for impending death, and experience of the dying process. Each dimension reflected a continuum from low to high understanding. The results suggest that nurses and other health care providers can impact the level of understanding within each of the dimensions in culturally sensitive ways and contribute to improving the experience with end-of-life decision making for Japanese Americans.     

Cultural diversity at the end of life: issues and guidelines for family physicians

Ethnic minorities currently compose approximately one third of the population of the United States. The U.S. model of health care, which values autonomy in medical decision making, is not easily applied to members of some racial or ethnic groups. Cultural factors strongly influence patients' reactions to serious illness and decisions about end-of-life care. Research has identified three basic dimensions in end-of-life treatment that vary culturally: communication of "bad news"; locus of decision making; and attitudes toward advance directives and end-of-life care. In contrast to the emphasis on "truth telling" in the United States, it is not uncommon for health care professionals outside the United States to conceal serious diagnoses from patients, because disclosure of serious illness may be viewed as disrespectful, impolite, or even harmful to the patient. Similarly, with regard to decision making, the U.S. emphasis on patient autonomy may contrast with preferences for more family-based, physician-based, or shared physician- and family-based decision making among some cultures. Finally, survey data suggest lower rates of advance directive completion among patients of specific ethnic backgrounds, which may reflect distrust of the U.S. health care system, current health care disparities, cultural perspectives on death and suffering, and family dynamics. By paying attention to the patient's values, spirituality, and relationship dynamics, the family physician can elicit and follow cultural preferences.     

Family–Therapist Relationships in Caring for Older Adults

ABSTRACT

Occupational therapists collaborate with family members when working with older clients. An understanding of the complexities within family–therapist relationships can optimize health care for older adults. This interpretive inquiry study used interviews and written responses to focused questions from 16 occupational therapists to describe insights of their interactions with family members of older clients. The analysis was performed using constant comparative approach. Exploration of the family–therapist relationships were situated in therapists’ stories and clinical experiences. Participants described challenges such as differing views, elder abuse, and cognitive impairment in the caregiver. This paper highlights the intricacies of family–therapist partnerships and therapists’ need for support. Strategies for optimal family–therapist relationships are discussed in the context of the results and the literature.     

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.     

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.     

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.     

Family-physician interactions in the intensive care unit

Surrogate designation has the potential to represent the patient's wishes and promote successful family involvement in decision making when options exist as to the patient's medical management. In recent years, intensive care unit physicians and nurses have promoted family-centered care on the basis that adequate and effective communication with family members is the key to substitute decision making, thereby protecting patient autonomy. The two-step model for the family-physician relationship in the intensive care unit including early and effective provision of information to the family followed by family input into decision making is described as well as specific needs of the family members of dying patients. A research agenda is outlined for further investigating the family-physician relationship in the intensive care unit. This agenda includes a) improvement of communication skills for health care workers; b) research in the area of information and communication; c) interventions in non-intensive care unit areas to promote programs for teaching communication skills to all members of the medical profession; d) research on potential conflict between medical best interest and the ethics of autonomy; and e) publicity to enhance society's interest in advance care planning and surrogate designation amplified by debate in the media and other sounding boards. These studies should focus both on families and on intensive care unit workers. Assessments of postintervention outcomes in family members would provide insights into how well family-centered care matches family expectations and protects families from distress, not only during the intensive care unit stay but also during the ensuing weeks and months.