Orchestrating Care: A Grounded Theory Study of Family Caregiving for Older Adults in Rural Areas.

Family caregivers provide the majority of long-term care and support of older adults as they age or approach the end of life. Studies often refer to family caregivers as invisible because the American healthcare system, public policy, and society do not support or recognize their work. Family caregivers who provide care to older adults who live in rural areas face unique challenges due to the rural environment. The purpose of this study was to inductively develop a theoretical framework that explains the process of family caregiving to older adults who live at home in rural areas and require daily assistance while exploring their experiences regarding access, utilization, challenges, and effectiveness of patient healthcare services and caregiver resources in rural areas. The grounded theory method of Strauss and Corbin was used for sampling, data collection, and data analysis. Fifteen family caregivers who oversaw and/or provided care on a daily basis to an older adult living in two rural counties of New York State participated in the study. Data were collected through two semi-structured interviews with each participant, yielding 30 interviews. Findings revealed that family caregivers engaged in the process of orchestrating care by growing into caregiving, integrating technology, and utilizing networks when providing and managing caregiving. Understanding caregiving from the perspective of family caregivers engaged in the process can inform healthcare practice, healthcare education, and public policy and can support better outcomes for both older adults and their family caregivers.

The meaning of comfort measures only order sets for hospital-based palliative care providers.

PURPOSE: Comfort Measures Only (CMO) is a label commonly used in the USA that guides the care of a hospitalized patient who is likely to die. The CMO label has unclear and inconsistent meaning, calling to question the experiences and practices of hospital-basedalliative care providers. The purpose of this study was to understand the meaning of CMO as experienced by hospital-based palliative care providers. METHODS: Using hermeneutic phenomenological research, we investigated eight palliative care experts' common experiences and shared practices of using CMO order sets in their hospital work settings. Data were collected through individual face-to-face interviews, and were analysed by an interpretive team. RESULTS: Four related themes and one constitutive pattern of "Dealing with Dying" reflect the meaning of comfort-measures-only practices. The themes are: comfort care as morphine drip; enacting a traditional binary pattern of care: all or nothing; supporting patient and family at end of life vs. CMO; and evolving culture-a better way to care for the dying. CONCLUSION: Palliative care providers and non-palliative clinicians understood and practiced end of life care in sharply different ways with dying in hospital settings, raising new questions that analyse, modify and extend extant knowledge.

Transition to comfort-focused care: Moral agency of acute care nurses.

BACKGROUND: Moving into the last phase of life comprises a developmental transition with specific needs and risks. Facilitating transitions is an important component of the work of nurses. When curative interventions are no longer helpful, nurses enact key roles in caring for patients and families. AIM: The aim of this study was to examine the experiences of registered nurses in acute care settings as they worked with patients and families to facilitate transition to comfort-focused care. RESEARCH DESIGN: Sampling, data collection, and data analysis were guided by constructivist grounded theory, chosen because of its strength in identifying and explicating social processes. PARTICIPANTS AND CONTEXT: A purposeful sample of 26 registered nurses working in acute care hospitals in one community in the northeastern United States participated in this study through semi-structured interviews. ETHICAL CONSIDERATIONS: The study received approval from the university's Institutional Review Board for the Protection of Human Subjects. Participants provided informed consent. FINDINGS: Nurses facilitated transition to comfort-focused care by enacting their moral commitments to patients and families. They focused on building relationships, honoring patient self-determination, and maintaining respect for personhood. In this context, they discerned a need for transition, opened a discussion, and used diverse strategies to facilitate achieving consensus on the part of patients, family members, and care providers. Regardless of how the process unfolded, nurses offered support throughout. DISCUSSION: Achievement of consensus by all stakeholders is critical in the transition to comfort-focused care. This study deepens our understanding of how nurses as moral agents utilize specific strategies to assist progress toward consensus. It also offers an example of recognizing the moral agency of nurses through listening to their voices. CONCLUSION: Increased understanding of effective nursing strategies for facilitating transition to comfort-focused care is essential for developing needed evidence for excellent care and strengthening end-of-life nursing education.

Family Outcomes and Perceptions of End-of-Life Care in the Intensive Care Unit: A Mixed-Methods Review.

The purpose of this review was to evaluate end-of-life care (EOLC) in the intensive care unit (ICU) from the perspective of family members. Sandelowski's segregated approach from Joanna Briggs Institute (JBI) Mixed-Methods Systematic Reviews guided this review. A search was conducted in PubMed, CINAHL, PsycINFO, EMBASE, and ProQuest databases and identified 50 papers (33 quantitative, 15 qualitative, and 2 mixed-methodology studies). Five synthesized themes (distressing emotions, shared decision-making, proactive communication, personalized end-of- life care, and valuing of nursing care) were identified. For quantitative results, study methodologies and interventions were heterogeneous and did not always improve family members' perceived quality of care and family members' psychological distress. Configuration of qualitative and quantitative data revealed ICU end-of-life interventions were ineffective because they were not guided by family members' reported needs and perceptions. To fulfill the family members' needs for the patients' EOLC in the ICU, researchers should develop a theory to explicitly explain how the family members experience ICU EOLC and implement a theory-based intervention to improve family psychological outcomes.

Guiding the Process of Dying: The Personal Impact on Nurses.

Some of the most ethically challenging and emotionally demanding aspects of nursing occur in caring for patients and their family at the end of life. The aims of this study were to examine the views of acute care nurses caring for patients during transition to comfort care, to describe the personal impact on nurses, and to identify nurses' strategies for self-support and development of competence. Using a qualitative descriptive approach, we analyzed data from 26 semistructured interviews.Nurses experienced moral distress in situations of continuing treatment when a cure was unlikely. In managing symptoms for patients, they struggled to foster an often-tenuous balance of patient comfort and calm without oversedation. They struggled to manage the competing demands of a workload including patients receiving curative care juxtaposed with those focused on comfort care. Nurses reflected on their fears as new nurses caring for end-of-life patients, the inadequacy of their preparation for this role, and their distress when the care provided felt inadequate to them.Nurses navigated challenges through support from nurse colleagues and effective leaders. They appealed to administrators to attend to care concerns arising from time-intensive nature of care. Mentoring and education facilitated assimilation to comfort-care nursing for novice nurses.

Metasynthesis: Dying adults' transition process from cure-focused to comfort-focused care.

AIM: To describe and explain the process of transition from cure-focused to comfort-focused health care as perceived and reported by patients, family members, and healthcare providers. BACKGROUND: Moving into the last phase of life due to advanced illness constitutes a developmental transition with increased vulnerability for patients and family. DESIGN: Qualitative metasynthesis. DATA SOURCES: Medline, CINAHL, and PsycInfo databases searched from inception through March 2016. Primary research reports published from 1990 to 2015, using qualitative designs to report transition experiences of patients, family members, and/or healthcare providers were included. REVIEW METHODS: Key elements were extracted and organized into matrices. Findings from each report were analysed using qualitative coding. RESULTS: The sample was 56 unique reports from 50 primary studies. Patients and families emphasized the importance of receiving understandable information, emotional support, respect for personhood and control. The critical juncture of 'realizing terminality' preceded a transition to comfort-focused care. Subsequently, a shift in goals of care emphasizing comfort and quality of life could occur. Continued provision of information, effective support, respect and control promoted 'reframing perceptions' and capacity to embrace a changed identity. Reframing allowed patient and family to find meaning and value in this last phase of life and to embrace the opportunity to prepare for death, nurture relationships, and focus on quality of living. CONCLUSION: Understanding the developmental process that can be engaged by patients and families at the end of life provides a theoretical basis that can inform choice and timing of interventions to reduce suffering and enhance positive outcomes.

Changing Focus: End-of-Life Care in a New York State Managed Long-Term Care Program.

In the United States, managed long-term care programs offer a noninstitutional approach to meeting the needs of increasing numbers of frail elders. Providing services that support both quality of life and quality of dying poses unique challenges. Using a qualitative descriptive design, we explored these challenges from the perspectives of care providers. Themes were identified using qualitative content analysis techniques applied to transcripts of 33 semistructured interviews. Professionals comprising an interdisciplinary care team and home health aide direct care providers described cues by which they identified movement into the end-of-life phase, their understandings of how care changed, and their concerns and recommendations for improvement. When the changing care needs could be met, a "good death" ensued, but that was not always possible. Managed long-term care programs are called upon to develop the capacity to integrate the phase of dying into the full story of each life for which they care.

Is It the Difference a Day Makes? Bereaved Caregivers' Perceptions of Short Hospice Enrollment.

CONTEXT: Hospice enrollment for less than one month has been considered too late by some caregivers and at the right time for others. Perceptions of the appropriate time for hospice enrollment in cancer are not well understood. OBJECTIVES: The objectives of the study were to identify contributing factors of hospice utilization in cancer for ≤7 days, to describe and compare caregivers' perceptions of this as "too late" or at the "right time." METHODS: Semistructured, in-depth, in-person interviews were conducted with a sample subgroup of 45 bereaved caregivers of people who died from cancer within seven days of hospice enrollment. Interviews were transcribed and entered into Atlas.ti for coding. Data were grouped by participants' perceptions of the enrollment as "right time" or "too late." RESULTS: Overall, the mean length of enrollment was MLOE = 3.77 (SD = 1.8) days and ranged from three hours to seven days. The "right time" group (N = 25 [56%]) had a MLOE = 4.28 (SD = 1.7) days. The "too late" group (N = 20 [44%]) had a MLOE = 3.06 (SD = 1.03) days. The difference was statistically significant (P = 0.029). Precipitating factors included: late-stage diagnosis, continuing treatment, avoidance, inadequate preparation, and systems barriers. The "right time" experience was characterized by: perceived comfort, family needs were met, preparedness for death. The "too late" experience was characterized by perceived suffering, unprepared for death, and death was abrupt. CONCLUSION: The findings suggest that one more day of hospice care may increase perceived comfort, symptom management, and decreased suffering and signal the need for rapid response protocols.

The Developmental Transition From Living With to Dying From Cancer: Hospice Decision Making.

Despite increasing utilization of hospice care, older adults with cancer enroll in hospice for shorter periods of time than those with other life-limiting illnesses. How older adults with cancer and their family members consider hospice is unknown. The purpose of this study was to compare decision making in late-stage cancer in people who enrolled in hospice with those who declined. Concepts from the Carroll and Johnson (1990) decision-making framework guided the development of a hospice decision-making model. The study design was exploratory-descriptive, cross-sectional, and used a two-group comparison. Qualitative and quantitative data were collected in the same interview. Open-ended questions were used to explore the illness trajectory and decision-making process. The interrelationships between functional ability, quality of life, and social support with hospice decision making were assessed using the Katz, QLQ-30, and Lubben Social Network Scales. Study participants included 42 older adults with cancer who had been offered hospice enrollment (24 non-hospice and 18 hospice) and 38 caregivers (15 non-hospice and 23 hospice); N = 80. The decisional model illustrates that the recognition of advanced cancer and information and communication needs were experienced similarly by both groups. There was interaction between the decisional stages: formulation of awareness and generation of alternatives that informed the evaluation of hospice but these stages were different in the hospice and non-hospice groups. The hospice enrollment decision represents a critical developmental juncture, which is accompanied by a transformed identity and substantive cognitive shift. Increased attention to the psychosocial and emotional issues that accompany this transition are important for quality end-of-life care.

Examining family meetings at end of life: The model of practice in a hospice inpatient unit.

OBJECTIVE: Our purpose was to rigorously examine the nature of family meetings as conducted in an inpatient hospice care unit in order to generate an inductive theoretical model. METHOD: In this two-phase project, we first interviewed eight members of the interdisciplinary care team who participated in multiple family meetings each week. Interview questions explored why and how they conducted family meetings. Using an observation template created from these interview data, we subsequently conducted ethnographic observations during family meetings. Using the methods of grounded theory, our findings were synthesized into a theoretical model depicting the structure and process of formal family meetings within this setting. RESULTS: The core of the family meeting was characterized by cognitive and affective elements aimed at supporting the family and facilitating quality care by clarifying the past, easing the present, and protecting the future. This inductive model was subsequently found to be highly aligned with a sense of coherence, an important influence on coping, and adaptation to the stress of a life-limiting illness. SIGNIFICANCE OF RESULTS: Provider communication with family members is particularly critical during advanced illness and end-of-life care. The National Consensus Project clinical practice guidelines for quality palliative care list regular family meetings among the recommended practices for excellent communication during end-of-life care, but do not provide specific guidance on how and when to provide such meetings. Our findings provide a theoretical model that can inform the design of a family meeting to address family members' needs for meaningful and contextualized information, validation of their important contributions to care, and preparation for the patient's death.

Contending with advanced illness: patient and caregiver perspectives.

CONTEXT: Despite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used. OBJECTIVES: To investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care. METHODS: This was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study. RESULTS: Participants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness. CONCLUSION: Findings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions.

Final decisions: how hospice enrollment prompts meaningful choices about life closure.

OBJECTIVE: The purpose of this study was to explore and describe decisions that faced newly enrolled hospice patients and their caregivers after hospice enrollment. METHOD: An exploratory, descriptive, cross-sectional design was employed using qualitative methods. In-depth in-person interviews were conducted with current hospice patients (n = 35) and caregivers (n = 45) from 53 families. RESULTS: The decision to enroll in hospice was a critical juncture on the trajectory of a terminal illness that allowed patients and their families an opportunity to consider subsequent tasks that were important for life closure. A typology of five decisions is presented: (1) operationalized advance care planning (ACP): a renewed focus on decisions about care at life's end; (2) surrogate decision-making: caregivers begin making both informal and formal decisions for the dying person; (3) meaning-making: the foreshortened time brings into focus decisions about seeing special people, attending events, and creating memories; (4) Location of death: decisions about whether the person wants to and can remain at home to die; and (5) final acts: decisions about funeral arrangements, wills, and leaving a legacy become central. ACP was found to exist on a continuum that ranged from absent ACP, dormant ACP, simplified ACP to activated ACP. Hospice enrollment became a catalyst for reactivating discussion of end-of-life choices. SIGNIFICANCE OF RESULTS: Hospice enrollment prompts the need to consider subsequent important choices that contribute to meaningful life closure, are central to the completion of a family relationship, and may influence adaptation in bereaved caregivers. It is important for clinicians to recognize that well-timed encouragement to consider and explore the use of hospice services, although it may indeed diminish hope for cure or recovery, simultaneously offers an opportunity to engage with important and time-sensitive developmental tasks.

Communication and advanced care planning in palliative and end-of-life care.

Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and end-of-life care. Two focused Medline searches were conducted to locate articles that addressed ACP in the U.S. Content analysis was utilized to summarize and categorize the literature into five domains: (1) ADs, (2) ACP and communication, (3) Barriers to ACP, (4) Differential domains of ACP, and (5) Interventions to enhance the process. Policies and protocols for ACP and communication have been developed to facilitate the process in different patient populations and locations of care. Effective ACP is an essential component of person-centered end-of-life and palliative care.

What influences African American end-of-life preferences?

BACKGROUND: The U.S. population is aging and increasingly culturally diverse. The challenges of an aging population desiring a good end to their lives combined with soaring costs for medical care serve as a mandate for providers to be aware of both patient preferences and other factors influencing decision-making at the end of life. METHODS: Systematic review of published research studies examining African American preferences related to end-of-life care and decision-making. FINDINGS: There are well documented differences in preferences for end-of-life care and utilization of services between non-Hispanic Whites and African Americans. African Americans do not use advance care planning (ACP) documents or hospice to the same extent as non-Hispanic Whites, and, even after controlling for income and access, the difference is significant. Many African Americans choose aggressive life-sustaining treatment at the end of life, even if that treatment seems likely to confer great burden with little chance of benefit. The reasons for this are multi-faceted and include knowledge of and access to services, historical mistrust of the health care system, and spiritual beliefs. CONCLUSIONS: African American end-of-life choices are influenced by knowledge of and access to services as well as by shared cultural beliefs in the role of family and others in decision-making, mistrust toward the health care system, and the importance of spirituality.

Hospice decision making: diagnosis makes a difference.

PURPOSE: This study explored the process of decision making about hospice enrollment and identified factors that influence the timing of that decision. METHODS: This study employed an exploratory, descriptive, cross-sectional design and was conducted using qualitative methods. In-depth in-person semistructured interviews were conducted with 36 hospice patients and 55 caregivers after 2 weeks of hospice care. The study was guided by Janis and Mann's conflict theory model (CTM) of decision making. Qualitative data analysis involved a directed content analysis using concepts from the CTM. RESULTS: A model of hospice enrollment decision making is presented. Concepts from the CTM (appraisal, surveying and weighing the alternatives, deliberations, adherence) were used as an organizing framework to illustrate the dynamics. Distinct differences were found by diagnosis (cancer vs. other chronic illness, e.g., heart and lung diseases) during the pre-encounter phase or before the hospice referral but no differences emerged during the post-encounter phase. IMPLICATIONS: Differences in decision making by diagnosis suggest the need for research about effective means for tailored communication in end-of-life decision making by type of illness. Recognition that decision making about hospice admission varies is important for clinicians who aim to provide person-centered and family-focused care.

The nature and timing of family-provider communication in late-stage cancer: a qualitative study of caregivers' experiences.

CONTEXT: Family members of people with advanced cancer can experience intensified distress and uncertainty during the final stages of their loved one's illness. Enhanced comprehension about disease progression, symptom management, and options for care can help families adapt, cope, and plan for the future. OBJECTIVES: Guided by concepts from the Sense of Coherence Theory, which illuminates factors that contribute to adaptation in stressful situations, the objective of this study was to explore and describe family caregivers' accounts of the nature and timing of communication they had with a loved one's health care provider(s) during the advanced stages of cancer and before hospice enrollment. METHODS: Retrospective in-depth interviews were conducted with caregivers of 46 people who died of cancer. Interviews were audiotaped, transcribed, and submitted to an iterative process of qualitative data analysis that included 1) systematic coding, 2) the use of data matrices to display summarized results and collapse the codes into themes, 3) and axial coding to characterize the nature of the themes. RESULTS: Overall, communication with providers was found to be either 1) satisfactory or 2) unsatisfactory. Satisfactory communication was 1) compassionate, 2) responsive, and/or 3) dedicated. Unsatisfactory communication was described as 1) sparse, 2) conflicted, 3) contradictory, and/or 4) brink of death. CONCLUSION: Communication with health care providers is critical for helping family caregivers understand and manage the changes that accompany a life-limiting illness. Timely communication with information and meaningful discussion about disease progression can help families prepare for the advanced stages of an illness and approaching death.

Responsive care management: family decision makers in advanced cancer.

The purpose of this prospective study was to develop a grounded theory explaining the process that family decision makers use to make care decisions with or for a family member with advanced cancer. Adult surrogate decision makers were recruited for multiple interviews over the patient's care trajectory: 40 surrogates provided 80 semi-structured interviews. Analysis of these narratives revealed a process of responsive care management that is inclusive of, but not limited to, decision-making roles. Monitoring, buffering, and taking over comprise the three phases of the process. Decision making was embedded within the family member's broader relational and care responsibilities.

Crisis in caregiving: when home-based end-of-life care is no longer possible.

Understanding the factors that precipitate caregiving crises that cannot be resolved at home is central to improving options for care at life's end. The purpose of this study was to explore caregivers' perceptions of the crises that preceded and were resolved by relocation during end-of-life care. In-depth interviews were conducted with 36 caregivers of people who died in a hospice house. The results illuminate a conceptual model of the caregiving crisis, which has three stages: (a) precipitating factors--the interrelationship between illness trajectory and reciprocal suffering (physical, psychological, emotional and social distress), (b) crisis, and (c) resolution (settled or unsettled). Relocation presents an opportunity for families to relinquish the burden of end-stage care so that they can resume and complete a lifelong relationship. Careful recognition of and attention to the intimate dynamics that accompany suffering and dying are essential elements of palliative care, which aims to uphold the dignity of the dying person and the integrity of the family in both caregiving and bereavement.

Family caregivers and cancer pain management: a review.

Due to the critical role of family caregivers in cancer pain management, this systematic review was undertaken to examine what is known about of their experiences and needs. Searches were conducted using electronic databases, and research reports from 1991 to 2007 were analyzed using a matrix method. Family caregivers were actively engaged in assisting with pain management and experienced significant needs and concerns related to this role. Myths and fears about opioid use remain widespread across cultures studied and across care settings. Family caregivers need education about pain management, training in problem-solving skills, and recognition from providers about their role in pain management. When clinicians better understand and respond to the needs of the family caregivers, they can enhance the quality of life and care outcomes for both patients and their caregivers.

Applying the transtheoretical model to health care proxy completion.

BACKGROUND: For many, an important health decision is whether or not to document end-of-life wishes using an advance directive (e.g., health care proxy). To date, interventions targeting this health behavior have had little effect on increasing advance directive completion rates. Health behavior models, such as the transtheoretical model (TTM) could be useful for understanding the health decision-making processes used along a continuum, from no intention to complete an advance directive to completing one and discussing it with an appointed advocate. PURPOSE: To explore the applicability of the TTM for a previously understudied health behavior-completing a health care proxy (HCP). METHOD: Four established TTM measures for completing a HCP (stages of change, processes of change, decisional balance, and self-efficacy) were administered to 566 adults with coverage from 1 of 2 health insurance companies. Separate analyses of variance were used to test the relationships between the independent variable (stages of change) and dependent variables (processes of change, decisional balance, self-efficacy scores). RESULTS: Consistent with other TTM research both the experiential and the behavioral processes of change revealed the lowest scores in the precontemplation stage peaking in the preparation stage. The pattern of pros and cons was replicated from previous TTM studies, with the 2 scores crossing over just prior to the preparation stage. Self-efficacy scores incrementally increased across the stages of change with the largest effect evident from the precontemplation to preparation stage. CONCLUSION: The models developed from this study can be used to guide the development of stage-based interventions for promoting health care proxy completion.