Clinician-patient interactions about requests for physician-assisted suicide: a patient and family view

BACKGROUND: Responding effectively to a patient request for physician-assisted suicide (PAS) is an important clinical skill that involves careful evaluation. Clinician responses to PAS requests, however, have only been described using data obtained from clinicians. OBJECTIVE: To describe qualities of clinician-patient interactions about requests for PAS that were valued by patients and their family members. PARTICIPANTS AND METHODS: Intensive qualitative case study involving multiple longitudinal interviews conducted prospectively with patients pursuing PAS and with their family members and retrospectively with family members of deceased patients who seriously pursued PAS. The study setting was community based. Participants were recruited through patient advocacy organizations, hospices, and grief counselors. A total of 35 cases were studied: 12 were prospective and 23 were retrospective. Study procedures involved semistructured interviews that were audiotaped, transcribed, reviewed, and analyzed by a multidisciplinary research team. RESULTS: Three themes were identified that describe qualities of clinician-patient interactions that were valued by patients and family members: (1) openness to discussions about PAS; (2) clinician expertise in dealing with the dying process; and (3) maintenance of a therapeutic clinician-patient relationship, even when clinician and patient disagree about PAS. CONCLUSIONS: These patient and family accounts reveal missed opportunities for clinicians to engage in therapeutic relationships, including discussions about PAS, dying, and end-of-life care. Clinicians responding to patients requesting PAS need communication skills enabling them to discuss PAS and dying openly, as well as expertise in setting reasonable expectations, individualizing pain control, and providing accurate information about the lethal potential of medications.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

Dying in the ICU: perspectives of family members

OBJECTIVE: To describe the perspectives of family members to the care provided to critically ill patients who died in the ICU. DESIGN: Multicenter, prospective, observational study. SETTING: Six university-affiliated ICUs across Canada. METHODS: Patients who received mechanical ventilation for > 48 h and who died in the ICU were eligible for this study. Three to four weeks after the patient's death, we mailed a validated questionnaire to one selected family member who made at least one visit to the patient in the ICU. We obtained self-rated levels of satisfaction with key aspects of end-of-life care, communication, and decision making, and the overall ICU experience. Main results: Questionnaires were mailed to 413 family members; 256 completed surveys were returned (response rate, 62.0%). In the final hours before the death of the patient, family members reported that patients were "totally comfortable" (34.8%), "very comfortable" (23.8%), or "mostly comfortable" (32.0%). Family members felt "very supported" (57.0%) and "supported" (30.7%) by the health-care team. Most (82.0%) believed that the patient's life was neither prolonged nor shortened unnecessarily. Most family members (90.4%) preferred some form of shared decision making. Overall, 52% of families rated their satisfaction with care as "excellent," 31% rated care as "very good," 10% as "good," 4% as "fair," and 2% as "poor." Overall satisfaction with end-of-life care was significantly associated with completeness of information received by the family member, respect and compassion shown to patient and family member, and satisfaction with amount or level of health care received. CONCLUSIONS: The majority of families of patients who died in participating ICUs were satisfied with the end-of-life care provided. Adequate communication, good decision making, and respect and compassion shown to both the dying patient and their family are key determinants to family satisfaction.     

Quality in residential care from the perspective of people living with dementia: The importance of personhood

BackgroundProviding quality care for people with dementia to meet the growing demand for services is a significant challenge to Australia and globally. When it comes to planning for current and future care needs, limited information is available on what people living with dementia and their family members consider the meaning of “quality” in residential care services.ObjectiveTo describe the meaning of quality residential care from the perspective of people with cognitive impairment and their family members.DesignQualitative data collection via in-depth interviews and focus groups was undertaken with people with dementia or cognitive impairment living in residential care or the community (n = 15), and family members of people with dementia (n = 26). Thematic analysis was undertaken to identify key themes.ResultsThe theme of supporting personhood was identified as the overarching concept of importance to both people with dementia and their family members and as the foundation for quality care. There were subtle differences in how this concept was expressed by people with dementia themselves and their family members. However, for both groups, access to meaningful activities and opportunities to feel useful and valued were identified as important ways to support personhood in residential care. Separate to this theme of personhood, family members also talked about the importance of a supportive physical environment in the care home, while for the people with dementia themselves maintaining a connection with family was an important contributor to their experience of good quality residential care.ConclusionsSupporting personhood was identified as a critical key concept underpinning quality residential aged care, from the perspective of both people with cognitive impairment and their family members. This highlights the important contribution that the psychological and social characteristics of care make to providing a good quality residential care experience from the perspective of consumers with dementia.     

Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalized patients and family members

BACKGROUND: To improve communication and decision making related to cardiopulmonary resuscitation (CPR), a greater understanding of the perspectives of hospitalized patients with advanced diseases and their family members are needed. METHODS: In five Canadian hospitals, we administered a face-to-face questionnaire to older inpatients with end-stage cancer and advanced medical diseases and, where possible, to one of their family members, regarding information needs, the deliberation process, and their preferred decisional role. FINDINGS: A total of 440 of 569 patients (78%) and 160 of 176 available caregivers (91%) agreed to participate. Most patients (61%) had thought about what treatment they wanted if their heart stopped, few patients (11.3%) could describe more than two components of CPR, and only 2.7% of patients thought that the success rate of CPR was < 10%. A minority of patients (34%) had discussed CPR with their physician; 37% did not want to discuss their preferences with their doctor. Patients who felt that end-of-life issues were relevant to them were 5.5 times more likely to want a discussion with the physician regarding resuscitation (odds ratio, 5.5; 95% confidence interval, 2.5 to 12.0). The preferred role in decision making was variable, but most patients (59.7%) and family members (81.6%) preferred some degree of shared decision making that included the family member. There were no significant differences between cancer and medical patients in their preferred decisional role. INTERPRETATION: Seriously ill hospitalized patients have poor knowledge about CPR, and variable preferences for deliberation and their role in the decision-making process regarding their treatment. Strategies that improve understanding of CPR and foster discussions that involve patients, family members, and physicians in the decision-making process may improve the quantity and quality of communication and decision making about CPR.     

Family satisfaction in the ICU: differences between families of survivors and nonsurvivors

BACKGROUND: We previously noted that the families of patients dying in the ICU reported higher satisfaction with their ICU experience than the families of survivors. However, the reasons for this finding were unclear. In the current study, we sought to confirm these findings and identify specific aspects of care that were rated more highly by the family members of patients dying in the ICU compared to family members of ICU survivors. METHODS: A total of 539 family members with a patient in the ICU were surveyed. Family satisfaction was measured using the 24-item family satisfaction in the ICU questionnaire. Ordinal logistic regression identified which components of family satisfaction were associated with the patient's outcome (ie, whether the patient lived or died). RESULTS: A total of 51% of respondents had a loved one die in the ICU. Overall, the families of patients dying in the ICU were more satisfied with their ICU experience than were families of ICU survivors, and the largest differences were noted for care aspects directly affecting family members. Significant differences were found for inclusion in decision making, communication, emotional support, respect and compassion shown to family, and consideration of family needs (p<0.01). CONCLUSIONS: The families of patients dying in the ICU were more satisfied with their ICU experience than were the families of ICU survivors. The reasons for this difference were higher ratings on family-centered aspects of care. These findings suggest that efforts to improve the support of ICU family members should focus not only on the families of dying patients but also on the families of patients who survive their ICU stay.     

Patient and Family Engagement in Care in the Cardiac Intensive Care Unit

Hospitalization in the cardiac intensive care unit can be a stressful experience for patients and families. Family members often feel overwhelmed by the severity of their loved one’s illness, powerless to affect their care, and struggle to comprehend information regarding their loved one’s current health status and treatment plan. Consequently, up to half of family members might develop psychological symptoms (depression, generalized anxiety, and post-traumatic stress disorder) and a syndrome of enduring psychological, cognitive, or emotional disturbances. Patient and family engagement (PFE) is an emerging approach that empowers family members to become essential and active partners in care delivery and research. In the patient care context, the goal of PFE is to improve the care experience and achieve better outcomes for patients and family members. As a result of societal trends, family members increasingly wish to directly participate in their relative’s care and be informed and involved in decision-making. There is growing evidence that engaging family members in care improves patient- and family-important outcomes after acute and critical illness. Although the role for PFE in care and research has been explored in the general critical care context, efforts to inform clinicians who manage patients with acute cardiovascular disease about the relevance of PFE are limited. In this review, we describe opportunities for PFE in the cardiac intensive care unit, outline the current evidence base for PFE in patient care, identify barriers to PFE and how to overcome them, and highlight knowledge gaps and areas for future investigations.     

AIDS: who will care at home?

This study examined a program to educate providers of home health care about AIDS. A U.S. Public Health Service-funded program PROJECT Tec-HI, was designed to train family members, friends, and homemaker/home health aides to care for AIDS patients. Students had classroom and clinical learning opportunities. Pre- and posttesting of five AIDS-related items embedded in a scale of general health care knowledge suggested differential learning of AIDS content. Students with experience caring for AIDS patients completed the curriculum significantly more often. The greater the level of students' knowledge on pretest the more likely they were to complete PROJECT Tec-HI. Results suggested that even persons willing to learn about AIDS are not immune to fears that preclude their ability to learn about the disease. This study suggests that AIDS educators must help students deal with their levels of fear in order to prepare quality care givers for AIDS patients.     

Practical guidance for evidence-based ICU family conferences

Because most critically ill patients lack decision-making capacity, physicians often ask family members to act as surrogates for the patient in discussions about the goals of care. Therefore, clinician-family communication is a central component of medical decision making in the ICU, and the quality of this communication has direct bearing on decisions made regarding care for critically ill patients. In addition, studies suggest that clinician-family communication can also have profound effects on the experiences and long-term mental health of family members. The purpose of this narrative review is to provide a context and rationale for improving the quality of communication with family members and to provide practical, evidence-based guidance on how to conduct this communication in the ICU setting. We emphasize the importance of discussing prognosis effectively, the key role of the integrated interdisciplinary team in this communication, and the importance of assessing spiritual needs and addressing barriers that can be raised by cross-cultural communication. We also discuss the potential value of protocols to encourage communication and the potential role of quality improvement for enhancing communication with family members. Last, we review issues regarding physician reimbursement for communication with family members within the context of the US health-care system. Communication with family members in the ICU setting is complex, and high-quality communication requires training and collaboration of a well-functioning interdisciplinary team. This communication also requires a balance between adhering to processes of care that are associated with improved outcomes and individualizing communication to the unique needs of the family.     

End-of-life care in the curriculum in Japan: a national survey of senior medical students

AIM: We conducted a national survey of senior medical students' attitudes about end-of-life care teaching programs for undergraduate students of Japanese medical schools from April 2004 to May 2006. METHODS: Our questionnaire survey focused on the students' attitudes towards the following end-of-life areas: 1) end-of-life topics, 2) teaching methods, 3) putting theories into practice, and 4) overall end-of-life issue. RESULTS: Overall, 1,039 students from 16 medical schools responded to our survey. The students who took part in the program appreciated the class on communication techniques with dying patients or family members of dying patients. As for the students who did not participate in the program, they expressed the wish to join a class concerning these issues. These students also expressed an interest in visiting hospices or conducting interviews with dying patients as part of their training. Most of the students formulated good opinions toward end-of-life issues, but not toward end-of-life practices. Regardless of whether they joined the program or not, most of the students had a positive attitude towards end-of-life education programs. CONCLUSION: The survey highlighted the need to consider wider implementation and improvement of end-of-life care education in the Japanese curriculum.     

The personal and social context of planning for end-of-life care

OBJECTIVES: To examine the potential facilitators of or deterrents to end-of-life planning for community-dwelling older adults, including personal (health-related and sociodemographic) and social (physician and family) influences. DESIGN: In-person interviews with older adults, telephone interviews with physicians and family members. SETTING: Cleveland, Ohio. PARTICIPANTS: Two hundred thirty-one adults aged 65 to 99 who were aging in place, 99 of their primary care physicians, and 127 of their family members. MEASUREMENTS: Questions assessing older adults' discussions with others about end-of-life plans, implementation of advance directives, and physical (Older American Resources and Services) illness index and mental (Short Portable Mental Status Questionnaire) health status. RESULTS: Just fewer than half of older adults had executed an advance directive and discussed their wishes with others. Only personal characteristics of elderly individuals were related to end-of-life plans, with whites, unmarried individuals, and younger adults more likely to have made preparations. Older adults' health status, as evaluated by the patient, physician, and caregiver, did not relate to the tendency to have made advance care plans. Older adults' family members were much more likely to report knowledge of advance care plans than were physicians. CONCLUSION: These findings suggest that many physicians are not talking with their patients about their end-of-life wishes. Furthermore, the propensity to have such discussions may relate more to the personal preferences and level of comfort of patients, physicians, and family members than on the health status of the older adult.     

Community physicians who provide terminal care.

BACKGROUND: Most dying patients are treated by physicians in community practice, yet studies of terminal care rarely include these physicians. OBJECTIVE: To examine the frequency of life-sustaining treatment use and describe what factors influence physicians' treatment decisions in community-based practices. METHODS: Family members and treating physicians for decedents 65 years and older who died of cancer, congestive heart failure, chronic lung disease, cirrhosis, or stroke completed interviews about end-of-life care in community settings. RESULTS: Eighty percent of eligible family and 68.8% of eligible physicians participated (N = 165). Most physicians were trained in primary care and 85.4% were primary care physicians for the decedents. Physicians typically knew the decedent a year or more (68.9%), and 93.3% treated them for at least 1 month before death. In their last month of life, 2.4% of decedents received cardiopulmonary resuscitation, 5.5% received ventilatory support, and 34.1% received hospice care. Family recalled a discussion of treatment options in 78.2% of deaths. Most discussions (72.1%) took place a month or more before death. Place of death, cancer, and having a living will were independent predictors of less aggressive treatment before death. Physicians believed that advanced planning and good relationships were the major determinants of good decision making. CONCLUSIONS: Community physicians use few life-sustaining treatments for dying patients. Treatment decisions are made in the context of long-term primary care relationships, and living wills influence treatment decisions. The choice to remain in community settings with a familiar physician may influence the dying experience.     

Palliative care in acute geriatric care units across Europe: Some reflections about the experience of geriatricians

PurposeLittle is known about geriatricians’ knowledge, training and attitudes towards end-of-life issues as well as about how their experience concerning end-of-life decisions in the older patient. The aim of this survey was to explore the experience and the attitudes of geriatricians across Europe towards end-of-life care of patients dying in acute geriatric care units.Subjects/Materials and methodsA quantitative online survey was sent to the 21 members of the full board of the European Union Geriatric Medicine Society (EUGMS). These representatives had the possibility to forward it to colleagues from their countries, if they were not working in a geriatric acute care unit.ResultsThirty-five geriatricians representing nine countries of Europe responded to the survey. The results highlighted a mortality rate in these units (between 10 and 30%). More than half of the geriatricians described few resources to help them deal with issues of end-of-life care (guidelines, ethics committee, and palliative care consultation). Twenty-four geriatricians had to take a decision to withhold or withdraw life-prolonging treatment in their patient. They reported a high level of burden associated with this decision-making and also the need of more training in palliative care.Discussion and conclusionThese results highlight a number of needs of geriatricians working in acute geriatric care units that should encourage an action plan on palliative care and geriatric medicine to improve the quality of life of older patients with chronic diseases and to avoid moral distress in caregivers.     

Becoming a patient with heart failure.

OBJECTIVE: The purpose of this study was to gain a better understanding of the process of becoming a patient with heart failure, a process of identity formation. Are there clues in the patients' stories about heart failure that might give us a better idea of how patients adjust to heart failure and what heart failure means to them? Meanings that individuals attach to events or situations are central to development of identity and subsequent behaviors.Design And Setting: Qualitative methods involving detailed interviews and grounded theory method were used in an outpatient cardiology department of a large health care facility in northeast Ohio. PATIENTS: Twenty-one patients with a diagnosis of heart failure were conveniently selected and interviewed for this research. Patients were selected on the basis of having a left ventricular ejection fraction of 35% or less and New York Heart Association class II, III, or IV. Other possible selection criteria (eg, VO(2Max ), walk test, or dyspnea) were not available for all patients and thus did not constitute consistent selection criteria. A broad net was cast for patients with varying characteristics to see if common processes and experiences existed regardless of the differences in clinical indicators. METHODS: Patients were interviewed in the examining room as part of a regularly scheduled visit with their cardiologists. All interviews were tape recorded and fully transcribed. Field notes and relevant patient chart data (eg, age, sex, race, marital status, cause of heart failure, comorbidities, history of hospitalization, New York Heart Association functional class, left ventricular ejection fraction) were included in the transcribed interviews. The transcribed interview was read and responses were given initial conceptual codes. These coded passages were categorized according to more abstract categories or concepts and underlying processes that encompass them. This process continues until all relevant passages have been categorized and subsumed under higher-order (more abstract or general) categories. RESULTS: The process of becoming a patient with heart failure involves a gradual process of taking on a new identity. Five distinct phases of this process of identity formation emerged from the data: a crisis event, the diagnosis, the patient's and family's response to the diagnosis, their acceptance and adjustment to life with this condition, and making the decision to get on with life. CONCLUSIONS: Most research on heart failure has focused on patients or their families farther along in the trajectory of this condition. We know little about the psychosocial experience of the early phases of this condition. Becoming a patient with heart failure is a process of searching for a meaning to this condition (what is it? what does it mean for the future?) and a process of taking on a new identity and appropriate role behaviors. This process takes place over a period of time. This suggests that the formation of individual identities evolve as new information becomes available, as meanings are attached to the new circumstances, and as a process of negotiating new roles among family members (and among patient, family members, and clinicians) takes place. The findings of this study suggest possible interventions that may positively affect the patient's condition and the quality of family life.     

Rheumatology outcomes: the patient's perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients

OBJECTIVES: Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More knowledge is needed about how patients assess outcomes in order to update current measurements. METHODS: Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and satisfaction/dissatisfaction with RA treatments were discussed. RESULTS: The participants' initial outcome assessments included physical and psychosocial items, which comprised overall treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Satisfaction with treatment was associated with the quality of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work. Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it possible for patients to 'take charge' of their life situation. Good resources for and access to rheumatology care were desired. CONCLUSIONS: Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: 'Normal life', 'Physical capacity', 'Independence' and 'Well-being'. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.     

Health-related quality of life in inflammatory bowel disease

The assessment of health-related quality of life may be an adjunct to understanding the chronic illness experience and its effects on health outcomes. In this study, we evaluated health-related quality of life of 150 patients with inflammatory bowel disease (63 ulcerative colitis, 87 Crohn's disease). We used a standardized measure, the Sickness Impact Profile, and a questionnaire we developed that elicits and prioritizes the disease-related worries and concerns of patients with IBD. Our preliminary data indicate that: (1) IBD patients experience moderate functional impairment more in the social and psychological than in the physical dimensions; (2) Crohn's disease patients report psychosocial dysfunction to a greater degree than ulcerative colitis patients; (3) IBD patients report greatest concerns about having surgery, degree of energy, and body image issues such as having an ostomy bag; and (4) functional status and patient concerns correlate better with other measures of health status and previous health care utilization than the physician's rating of disease activity. We believe that questionnaires measuring health-related quality of life (HRQOL) can be used in research and patient care to extend the clinical assessment of patients with IBD. Further work is needed to determine the role of HRQOL relative to disease activity and other physician-based assessments in predicting health outcomes.     

Ethical aspects of percutaneous endoscopic gastrostomy placement for artificial nutrition and hydratation

Of the many decisions that family members and physicians must make about medical care in patients with advanced disease and perceived poor quality of life, none is more heart-wrenching than the decision about artificial nutrition and hydratation. The endoscopist often is placed in a precarious position when percutaneous endoscopic gastrostomy tube placement is requested in such patients. Clinical decision-making between the patient, the family and the physician should be consistent with legal and ethical principles. The purpose of this article is to provide an evaluation of medical and ethical issues regarding the decision on placing a percutaneous endoscopic gastrostomy tube for various indications, as well as suggesting strategies to optimize the decision-making process.