Dying patients' need for emotional support and personalized care from physicians: perspectives of patients with terminal illness,families, and health care providers

This study addressed the emotional and personal needs of dying patients and the ways physicians help or hinder these needs. Twenty focus groups were held with 137 individuals, including patients with chronic and terminal illnesses, family members, health care workers, and physicians. Content analyses were performed based on grounded theory. Emotional support and personalization were 2 of the 12 domains identified as important in end-of-life care. Components of emotional support were compassion, responsiveness to emotional needs, maintaining hope and a positive attitude, and providing comfort through touch. Components of personalization were treating the whole person and not just the disease, making the patient feel unique and special, and considering the patient's social situation. Although the levels of emotional support and personalization varied, there was a minimal level, defined by compassion and treating the whole person and not just the disease, that physicians should strive to meet in caring for all dying patients. Participants also identified intermediate and advanced levels of physician behavior that provide emotional and personal support.     

The district nurse and the district physician in health care teams. An analysis of the content of primary health care

An assessment of community nursing in relation to physician care has been made in a Swedish primary care district. The staff was organized in health care teams. A totally integrated, comprehensive care service for everyone in the geographically defined district was made possible, as all members of the team used the same medical records. Visits in district care (district nurse, practical nurse) amounted to more than 50% of the visits to the teams. The visiting pattern in district care was dominated by the young and the old, the ages below 5 years of age making 3.7 visits per year, and the ages above 75 years making 10.0 visits. Health care was an important task among the children, while chronic ulcer of skin, senile dementia and diabetes were the most common diagnoses among the elderly. Every third visit in district care was a home visit. In almost 50% of the visits no appointment had been made in advance, which demonstrates a high accessibility to the district nurse. The distribution of diagnoses presented several social problems. Diagnoses like neuroses, alcoholism, and senile dementia produced many visits by few patients. Compared to physician visits, the district nurse made more home visits, had more visits among the young and the old, and had a different distribution of diagnoses. Regardless of, or despite, their different ways of working, the district nurse and the district physician complemented each other in the team co-operation. Besides her role as a health professional concerned about health care and medical treatment, the district nurse is an important social contact for many individuals living in her district.     

Families and hospitalized elders: A typology of family care actions

The extensive care provided by families to their elderly relatives in the home is well documented. Although family caregiving is likely to be continued during hospitalization of elderly relatives, limited research has been conducted to address the nature of family care for hospitalized elders. The main purpose of this qualitative study was to refine the content domain of family care for hospitalized elders. Altogether 25 interviews were done. Of the 16 participants, 6 were family members, 6 were patients, and 4 were nurses; 7 participants were interviewed once and 9 participants were interviewed twice. Qualitative analysis based on Lofland and Lofland's (1984, 1995) approach resulted in the identification of three major content domains: family members providing care to the patient, working together with the health care team, and taking care of themselves. This typology suggests a shift of research in this area from its current focus on family needs to a view of family caregivers as partners with the health care team.     

Priorities in primary health care. The views of patients, politicians and health care professionals

A written inquiry was undertaken to explore the expectations towards primary care physicians (general practitioners), as expressed by patients, local health board members and health centre staff members. Treatment without delay was given top priority both by patients and board members, while continuity of care was considered most important by the health care professionals. Great similarity of opinions was expressed by patients and health board members, while staff members differed significantly in their views. A low degree of participation in the study by the politicians coincided with the authors' experience of lack of interest in the content of primary health care shown by health board members.     

Transitioning care of an adolescent with cystic fibrosis: development of systemic hypothesis between parents, adolescents, and health care professionals

This qualitative study explored the experience of parents and adolescents living with cystic fibrosis prior to the transfer of the adolescent's care from a pediatric to an adult health care facility. Semistructured interviews were conducted with seven families receiving care from a specialized cystic fibrosis clinic; parents and adolescents were interviewed separately, followed by a group interview with members of a health care team comprising eight professionals from the clinic. Interviews were analyzed through a systemic lens which accounts for interaction and reciprocity in relationships. The parents' experience was marked by suffering and uncertainty that remained unexpressed to the health care team, even though team members had known the family since the child was first diagnosed. Findings led to identifying a systemic hypothesis that accounted for the interactions and relational processes between parents and the health care team. This hypothesis may guide the development of systemic family nursing interventions that target this complex, relational, transition process.     

Management of patients in the intensive care unit: comparison via work sampling analysis of an acute care nurse practitioner and physicians in training.

BACKGROUND: Little is known about aspects of practice that differ between acute care nurse practitioners and physicians that might affect patients' outcomes. OBJECTIVE: To determine if time spent in work activities differs between an acute care nurse practitioner and physicians in training (pulmonary/critical care fellows) managing patients' care in a step-down medical intensive care unit. METHODS: Work sampling techniques were used to collect data when the nurse practitioner had 6 months' or less experience in the role (T1), after the nurse practitioner had 12 months' experience in the role (T2), and when physicians in training provided care on a rotational schedule (nurse practitioner not present, T3). These data were used to estimate the time spent in direct management of patients, coordination of care, and nonunit activities. RESULTS: Results for T1 and T2 were similar. When T2 and T3 were compared, the nurse practitioner and the physicians in training spent approximately half their time in activities directly related to management of patients (40% vs 44%, not significantly different). The nurse practitioner spent more time in activities related to coordination of care (45% vs 18%; P < .001) and less time in nonunit activities (15% vs 37%; P < .001). CONCLUSION: The nurse practitioner and the physicians in training spent a similar proportion of time performing required tasks. Because of training requirements, physicians spent more time than the nurse practitioner in nonunit activities. Conversely, the nurse practitioner spent more time interacting with patients and patients' families and collaborating with health team members.     

CHOICES: promoting early access to end-of-life care through home-based transition management

CHOICES is a comprehensive home-based care coordination program designed to bridge the gap between home health and hospice for Medicare + Choice enrollees with advanced chronic illness in San Francisco's East Bay region. Key elements of the program include physician education, enrollment of patients with high disease burden who may not be terminally ill, co-management of care with the primary physician, and an advanced practice clinical team that provides comprehensive in-home assessments, a flexible mix of life-prolonging and palliative care that evolves with disease progression, focused education and advance planning, and caregiver support. During a 42-month demonstration, 208 patients were enrolled in the program. Eighty percent had a non-cancer diagnosis; 40% were people of color. After an 8-month follow-up, 44% of the study cohort had died in the program or after transfer to hospice, 51% had been discharged, and 5% remained active. Median length of stay for decedents was 260 days. Preliminary evidence supports the program's feasibility and acceptability to patients, families, physicians, and agency partners. However, the uncertain future of Medicare + Choice and of managed care may jeopardize the program's sustainability. Policymakers and taxpayers will need to determine how to care for the growing number of chronically ill elderly who wish to remain at home as illness advances. The care needs of these patients and their families may overwhelm a health system organized around hospital treatment of acute illness.     

A network model of communication in an interprofessional team of healthcare professionals: A cross-sectional study of a burn unit

Healthcare teams consist of individuals communicating with one another during patient care delivery. Coordination of multiple specialties is critical for patients with complex health conditions, and requires interprofessional and intraprofessional communication. We examined a communication network of 71 health professionals in four professional roles: physician, nurse, health management, and support personnel (dietitian, pharmacist, or social worker), or other health professionals (including physical, respiratory, and occupational therapists, and medical students) working in a burn unit. Data for this cross-sectional study were collected by surveying members of a healthcare team. Ties were defined by asking team members whom they discussed patient care matters with on the shift. We built an exponential random graph model to determine: (1) does professional role influence the likelihood of a tie; (2) are ties more likely between team members from different professions compared to between team members from the same profession; and (3) which professions are more likely to form interprofessional ties. Health management and support personnel ties were 94% interprofessional while ties among nurses were 60% interprofessional. Nurses and other health professionals were significantly less likely than physicians to form ties. Nurses were 1.64 times more likely to communicate with nurses than non-nurses (OR = 1.64, 95% CI: 1.01–2.66); there was no significant role homophily for physicians, other health professionals, or health management and support personnel. Understanding communication networks in healthcare teams is an early step in understanding how teams work together to provide care; future work should evaluate the types and quality of interactions between members of interprofessional healthcare teams.     

An 8-year prospective follow-up study of physicians departing health care in Belgium (1994-2002)

Several OECD countries have capped the number of physicians to be licensed to practice. However, a relevant cap must take into account changes in physician activities. We set out to study the transitions leading physicians to leave health care or to stop any activity in health system. These transitions were assessed using a register of medical practice. We studied changes in activity between 1994 and 2002 for about 19,840 physicians who in 1994 were already working for 5 years and were in 2002 less than 65 years old. After 8 years of career, one physician out of 20 were inactive in health system. Some medical specialties such as surgery and radiotherapy had a greater risk of leaving health care while GP's had a lower risk. Gender differences in leaving health system were mostly non-existant in younger age groups but then increased with age. Among physicians aged 55 and over, women were more likely to leave health system. We conclude that the percentage of physicians leaving health care after 5 years of practice is significant and deserve being taken into account for manpower planning and that planning should be aware of that some groups of physicians are more at risk than others to leave health care. Qualitative studies would help understand better this drop out.     

Academic family health teams: Part 1: patient perceptions of core primary care domains

Objective

To explore patients’ perceptions of primary care (PC) in the early development of academic family health teams (aFHTs)—interprofessional PC teams delivering care where family medicine and other health professional learners are trained—focusing on the 4 core domains of PC.

Design

Self-administered survey using the Primary Care Assessment Tool Adult Expanded Version (PCAT), which addresses 4 core domains of PC (first contact, continuity, comprehensiveness, and coordination). The PCAT uses a 4-point Likert scale (from definitely not to definitely) to capture patients’ responses about the occurrence of components of care.

Setting

Six aFHTs in Ontario.

Participants

Adult patients attending appointments and administrators at each of the aFHTs.

Main outcome measures

Mean PCAT domain scores, with a score of 3 chosen as the minimum expected level of care. Multivariate log binomial regression models were used to estimate the adjusted relative risks of PCAT score levels as functions of patient- and clinic-level characteristics.

Results

The response rate was 47.3% (1026 of 2167). The mean age of respondents was 49.6 years, and most respondents were female (71.6%). The overall PC score (2.92) was just below the minimum expected care level. Scores for first contact (2.28 [accessibility]), coordination of information systems (2.67), and comprehensiveness of care (2.83 [service available] and 2.36 [service provided]) were below the minimum. Findings suggest some patient groups might not be optimally served by aFHTs, particularly recent immigrants. Characteristics of aFHTs, including a large number of physicians, were not associated with high performance on PC domains. Distributed practices across multiple sites were negatively associated with high performance for some domains. The presence of electronic medical records was not associated with improved performance on coordination of information systems.

Conclusion

Patients of these aFHTs rated several core domains of PC highly, but results indicate room for improvement in several domains, particularly first-contact accessibility. A future study will determine what changes were implemented in these aFHTs and if patient ratings have improved. This reflective process is essential to ensuring that aFHTs provide effective models of PC to learners of all disciplines.     

Primary care nursing role and care coordination: an observational study of nursing work in a community health center

Care coordination is a core element of the Patient-Centered Medical Home and requires an effective, well educated nursing staff. A greater understanding of roles and tasks currently being carried out by nurses in primary care is needed to help practices determine how best to implement care coordination and transform into PCMHs. We conducted an observational study of primary care nursing in a Community Health Center by creating a classification schema for nursing responsibilities, directly observing and tracking nurses' work, and categorizing their activities. Ten nurses in eight different practice sites were observed for a total of 61 hours. The vast majority of nursing time was spent in vaccine and medication administration; telephone work; and charting and paper work, while only 15% of their time was spent in activity that was classified broadly as care coordination. Care coordination work appeared to be subsumed by other daily tasks, many of which could have been accomplished by other, lesser trained members of the health care team. Practices looking to implement care coordination need a detailed look at work flow, task assignments, and a critical assessment of staffing, adhering to the principal of each team member working to the highest level of his or her education and license. Care coordination represents a distinct responsibility that requires dedicated nursing time, separate from the day to day tasks in a busy practice. To fully support these new functions, reimbursement models are needed that support such non visit-based work and provide incentives to coordinate and manage complex cases, achieve improved clinical outcomes and enhance efficiency of the health system. This article describes our study methods, data collection, and analysis, results, and discussion about reorganizing nursing roles to promote care coordination.     

Home-based care for people with disabilities: Role of registered nurses within the District health system in Thailand

BackgroundIn Thailand, the number of people with physical disabilities (PwD) has been increasing. Following sweeping health care reforms in 2002, efforts were made to improve accessibility to health care by greatly increasing the number of Registered Nurses (RNs) working in local community health centres. Little is known, however, about the role of RNs in improving accessibility to home-based care and the outcomes of care for PwD in Thailand.AimTo explore the role of RNs in providing high quality home-based services for PwD who have severe limitations in movement.MethodsA case study design was used to explore and describe the role of RNs in home-based care for PwD in one rural and one urban area in lower north Thailand. There were 73 participants, including PwD and their family members, community health volunteers, primary care providers, local government officers and members of the District Health management team. Data were collected from in-depth interviews and focus groups, which were analysed using thematic analysis.ResultsThe roles of RNs in home-based care for PwD were found in four domains, as case manager, rehabilitation care provider, manager of the community health volunteers and broader care coordinator.ConclusionThe full scope of the RN role in the provision of home-based care for PwD, in the district health system of Thailand, not only involves direct nursing care. The role also encompasses planning and co-ordination of the broad range of professional and non-professional services to meet the needs of PwDs in rural and urban settings.     

Crossing community sectors: challenges faced by families of children with special health care needs

This article identifies unmet needs and challenges of 37 families caring for children with special health care needs (CSHCN). Data were collected in focus groups. Data saturation occurred in the third group. Another group was conducted to ensure adequate inclusion of rural participants. Mean age of participants was 36 years. Most participants were women (92%), Caucasian (65%), high school graduates (89%), and employed, with 38% from rural communities. All families had health care insurance, primarily Medicaid (87%). An interdisciplinary team used NVIVO software to facilitate content analysis. Seven areas emerged: family support systems, early intervention/school systems, coordination of care, lack of knowledge, provider/family relationships, parent roles, and insurance systems. Caregivers noted the critical role of nurses but a lack of nurse presence in community care systems. This study adds to the multidimensional nature of caring for CSHCN and highlights the importance of considering how families interface with multiple community sectors.     

Primary care attributes, health care system hassles, and chronic illness

BACKGROUND: Patients with a chronic illness are likely to report difficulties in their encounters with the health care system. Although most patients with a chronic illness are managed by primary care clinicians, little is known about how the attributes of primary care might be related to health care system hassles. OBJECTIVE: We sought to examine the relationship between attributes of primary care and health care system hassles among veterans with one or more chronic illnesses. RESEARCH DESIGN: This was a cross-sectional mailed survey. SUBJECTS: We included veterans with one or more chronic illnesses who were cared for in the South Texas Veteran's health care system. MEASURES: The Components of Primary Care Instrument was used to measure 4 attributes of primary care: accumulated knowledge of the patient by the clinician, coordination of care, communication, and preference for first contact with their primary care clinician. A 16-item health care systems hassles scale was constructed and demonstrated good face validity and reliability with a Cronbach's alpha of 0.94. RESULTS: Of the 720 surveys administered by mail, 422 (59%) were returned. Patients with multiple chronic illnesses reported a higher level of hassles than patients with a single chronic illness. After controlling for patient characteristics, primary care communication and coordination of care were inversely associated with patient hassles score: as communication and coordination improved, the reported level of hassles decreased. CONCLUSIONS: Effective delivery of primary care to patients with one or more chronic illnesses may be important in decreasing the level of hassles they experience as they interact with the health care delivery system.     

Primary care physicians and use of health services in Finland

This article presents results from a study investigating the relationships between the availability of resources and the use of health services in Finland focusing on the health centre physician supply variable. The study uses observations from other studies on the subject and knowledge of the Finnish and other health services as a point of departure. It tries, by using the systems approach, to examine the effects on use of the health services resources considered to be important from the organizational and health policy points of view. The specific aim of the study was to investigate the relationships between the health centre physicians and other health centre resources and use in various health care sectors. The results suggest that the organization of primary health care, including the primary care physicians, has a profound potential effect on the use and costs of the total health care system.     

Informed consent: what health care professionals need to know, Part 1

Although the responsibility to obtain informed consent typically rests with physicians, nurse managers need to understand their role as caregivers and members of the health care team.     

Optimizing hospital-based home care for dying cancer patients: a population-based study

Health-related quality of life (HRQL) is difficult to define and measure. It is a generic term that includes concepts such as physical health, life satisfaction, psychological well-being and self-integrity. Realizing and appreciating the importance of HRQL is crucial for physicians if they are to be in a position to offer appropriate suggestions in assisting patients and their families in the decision-making process regarding cancer treatment and terminal care. In order to determine whether Greek physicians take into consideration HRQL when assessing different therapeutic options, we conducted a postal survey. A total of 1500 Greek physicians (internists, oncologists and anaesthesiologists) were asked to complete a questionnaire. We received replies from 1280 (85%). In summary, we found that Greek physicians: (1) have already started taking HRQL into consideration when reviewing their therapeutic options; (2) increasingly include HRQL in research studies as an outcome measure; (3) do not yet have thoroughly sufficient training in the holistic care of cancer patients and their families; (4) mostly do not have the opportunity to work in interdisciplinary therapeutic teams where they can exchange ideas and consider different aspects of alternative therapeutic methods. It is concluded that HRQL has already been introduced as an important determinant of therapeutic choices in cancer care in Greece. However, efforts need to be made to allow HRQL to enjoy its appropriate place in cancer care.     

Pre-Visit Prioritization for complex patients with diabetes: Randomized trial design and implementation within an integrated health care system

Background/aimsDespite robust evidence to guide clinical care, most patients with diabetes do not meet all goals of risk factor control. Improved patient–provider communication during time-limited primary care visits may represent one strategy for improving diabetes care.MethodsWe designed a controlled, cluster-randomized, multi-site intervention (Pre-Visit Prioritization for Complex Patients with Diabetes) that enables patients with poorly controlled type 2 diabetes to identify their top priorities prior to a scheduled visit and sends these priorities to the primary care physician progress note in the electronic medical record. In this paper, we describe strategies to address challenges to implementing our health IT-based intervention study within a large health care system.ResultsThis study is being conducted in 30 primary care practices within a large integrated care delivery system in Northern California. Over a 12-week period (3/1/2015–6/6/2015), 146 primary care physicians consented to enroll in the study (90.1%) and approved contact with 2496 of their patients (97.6%). Implementation challenges included: (1) navigating research vs. quality improvement requirements; (2) addressing informed consent considerations; and (3) introducing a new clinical tool into a highly time-constrained workflow. Strategies for successfully initiating this study included engagement with institutional leaders, Institutional Review Board members, and clinical stakeholders at multiple stages both before and after notice of Federal funding; flexibility by the research team in study design; and strong support from institutional leadership for “self-learning health system” research.ConclusionsBy paying careful attention to identifying and collaborating with a wide range of key clinical stakeholders, we have shown that researchers embedded within a learning care system can successfully apply rigorous clinical trial methods to test new care innovations.     

Evaluation of users' satisfaction regarding mental health care in the Family Health Strategy

The objective of this study is to evaluate the satisfaction of patients with mental suffering regarding the comprehensiveness of the treatment they received from the Family Health Strategy. This case study was developed based on an evaluation study with a qualitative approach at a family health care unit in Chapecó, Santa Catarina. Subjects were 13 users with some kind of mental disorder. The following seven domains were used to evaluate satisfaction: autonomy, confidentiality, communication, respectful treatment, immediate treatment, basic facility conditions, and accessibility to social support networks. It was found that users perceived the strengths and weaknesses of service organization and of the care that was provided: the attachment, the relationship between the team and the community, care with the family, home visits, and the health professionals comprehensive view in the physical exam were reported to be reasons for the users' satisfaction.     

Documenting patients' end-of-life decisions

The anguish families experience when they are asked to make health care decisions for incompetent members has stimulated the search for an adequate procedure to document patients' end-of-life decisions. This study explores a method of recording competent patients' wishes via a "value history," a questionnaire that can guide families and the health care team during an incompetent person's terminal illness. Questions addressed were these: Can a primary care physician gather information from competent patients about their care before they become incompetent? Can a nurse practitioner gather the information as efficiently as a physician? Do patients want this information recorded in their charts? and, Is the primary care office as well as the patient's home an appropriate location to obtain a value history? Four hundred patients were invited to record their wishes for future care. Patients expressed that they wanted to be told the truth about their health and their health care, and they wanted to participate in decision-making, even while dying. The majority did not want to be maintained indefinitely on life-support systems. Patient responses were similar regardless of whether the NP or physician conducted the interview. A primary care office or patient's home are both suitable for filling out the value history. Because of the enthusiastic patient responses, the authors recommend that value histories become a routine part of a patient's medical record.