Hospice encompasses services to support persons with terminal illness in managing pain and symptoms and in assisting with the emotional and psychosocial aspects of dying.1 Hospices are serving an increasing number of patients with diverse characteristics, in terms of both diseases as well as racial, ethnic, religious, and cultural backgrounds.2,3 Along with increased use of hospice and diversity in patient populations, there is concern over problematic trends in service usage, including referrals during the last days of life ("late referral") and hospice disenrollment ("live discharge").2,4,5 The structure and organization of hospice service delivery may contribute to these problematic patterns of service utilization, including issues with language interpretation and cultural insensitivity among hospice providers.6,7 These issues have prompted calls for more culturally competent care for people nearing the end of life.8
There are more than 6.5 million adults in the United States with heart failure, and this population represents a growing share of hospice patients overall.3,9 Patients with heart failure face unique challenges once enrolled in hospice, including an unpredictable disease trajectory and high rates of live discharge relative to other diagnoses.10,11 In addition, the current US health care environment presents a complex web of sociocultural impediments to hospice that shape patient decision making at the end of life.12 Patients with heart failure who possess biomedical knowledge about their disease and its progression, the skills to communicate with health care providers, and the ability to mobilize available resources to cope with illness may have more success with navigating health care interactions and organizations, including those within the hospice setting.13 However, previous studies have not identified the various sociocultural components that influence how patients with heart failure and their families navigate hospice care. Existing research among the larger population of hospice patients and persons with advanced illness suggests several potential areas for study. For one, gaps in assistance from formal and informal caregivers pose considerable problems during the advanced stages of terminal illness, when individuals experience declines in physical functioning and distressing symptoms.14,15 Poor knowledge about hospice is also common, including misperceptions regarding eligibility and coverage of services.16 Limited understanding and unrealistic expectations of hospice services can increase the risk for hospitalization, especially when patient goals of care are not aligned with those of the hospice interdisciplinary team.17 The hospice team may view patients whose health care goals are aligned with the hospice philosophy, including acceptance of death and a desire to avoid the hospital, as facilitating productive interactions. Conversely, patients who exhibit lesser acceptance of their terminal diagnosis or who are reluctant to engage in advance care planning may be perceived by the hospice team as barriers to care.18 Patients' and caregivers' ability to recognize and communicate distressing symptoms to the hospice team, including seizures and shortness of breath, can prevent crises that trigger emergency calls resulting in hospitalization.11,17,19 The ability of patients and families to communicate symptoms to the hospice team may be further compromised by language and cultural barriers. English-language proficiency has been associated with increased willingness to use hospice services among Hispanic populations and may facilitate access to information and acceptance of hospice.20 Finally, patients with a greater understanding of self-management strategies, including knowing when and how to use medications to control symptoms of pain and discomfort, may be more likely to manage these symptoms.21
This study aimed to add to this existing literature by identifying themes from qualitative interviews with interdisciplinary team members regarding sociocultural components that influence how patients with heart failure and their families navigate hospice care. Interdisciplinary teams represent the core of hospice and palliative care services; are composed of physicians, nurses, social workers, and bereavement/spiritual counselors among other disciplines; and are responsible for coordinating a holistic plan of care for patients.22 The interdisciplinary nature of hospice teams presents an opportunity not only to understand what they perceive as the most important components of hospice care but also to gain insight into the types of knowledge, attitudes, and resources that shape hospice care delivery for patients with heart failure.
METHODS
Study Setting and Sample
Qualitative interviews were conducted with interdisciplinary team members at a large not-for-profit hospice in New York City between 2018 and 2019. Interviews were part of a larger multimethod study investigating challenges to caring for hospice patients with heart failure.11,23,24 Team members were sampled across disciplines and service areas throughout New York City. Interviewees were recruited during interdisciplinary team meetings, then provided informed consent, and completed the interview in nearby private offices. An iterative approach was used to develop interview questions about what team members perceive as the unique characteristics and challenges of serving hospice patients with heart failure, the range of sociocultural and contextual factors that influence how patients with heart failure and their families navigate hospice care, and their perspectives regarding facilitators and barriers to care delivery. A full list of the semistructured questions from these interviews is provided in the Figure. Interviews lasted approximately 30 to 45 minutes and were audio-recorded and transcribed verbatim. Interviewees received $25 certificates. Study procedures were approved by institutional review boards at the participating agency and its academic partners.
Data Analysis
Interview transcripts were analyzed using grounded theory methods.25 The first step involved open coding of the first several transcripts, during which 4 members of the study team highlighted and labeled all potentially meaningful phenomena using Dedoose.26 These 4 team members then met to compare the full list of codes for similarities and differences, with related codes being grouped together under parent categories. Interrater reliability was assessed for frequently applied codes and suggested good levels of agreement between coders (Cohen [kappa] statistic ranged from 0.77 to 0.88). Preliminary themes emerged during the early stages of analysis. These preliminary themes were used to refine the interview guide for subsequent participants, using targeted questions to probe deeper discussions. Interviews were conducted until sufficient conceptual depth was reached across study themes.27 Weekly meetings were convened among the study team to discuss coding schemas and progress with applying those coding schemas to all remaining transcripts. Upon completion of coding, the first author wrote extensive memos to elaborate on coding notes and expand upon ideas regarding themes in interdisciplinary team members' perceptions of sociocultural components that influence how patients with heart failure and their families navigate hospice care. These themes were then shared and discussed with the entire study team and revised for clarity. Identifying information has been removed from quotes, and all names referring to interviewees are pseudonyms.
RESULTS
The characteristics of 32 interdisciplinary team members who were interviewed are shown in Table 1. Most interviewees were female (81%) and nurses (75%), with an average age of 48 years. A smaller proportion of interviewees practiced disciplines other than nursing, including social work (13%), medicine (6%), or spiritual counseling (6%). Five themes were identified regarding sociocultural components perceived by interdisciplinary team members as shaping how patients with heart failure and their caregivers navigate hospice care. These themes are described hereinafter and illustrated with additional quotations in Table 2.
Looking Out: Caregiving Support in Hospice Care
Team members described how caregiving support for hospice patients with heart failure helped to supplement the services they received from hospice agencies. Team members identified these supports as the presence of "a lot of people helping out [in the home]," including formal support for hospice patients from privately hired caregivers and informal support from family members. Patients with higher incomes and wealth secured "quick access to health care providers" including privately hired nurses and aides who helped keep patients comfortable at home by providing emotional support and assisting with tasks such as administering medications to manage shortness of breath. Hospice patients without family caregivers or privately hired caregivers relied on the hospice team to be "looking out" for them. Patients who lacked a "support system" on "a consistent basis" were seen by team members as having greater difficulty managing their symptoms and avoiding pain and suffering. Team members viewed gaps in caregiving support for hospice patients as contributing to their hospitalization risk: "And part of why people call [911] for any diagnosis when they go to the hospital, is that they do not feel like they have enough support in the home" (John, nurse).
What It Really Means: Patients' Knowledge and Understanding of Hospice
Hospice team members viewed patients with heart failure who were knowledgeable about hospice as better able to make use of hospice services and communicate with team members. However, team members stated that "most people do not understand what hospice is when they first come on" (Donald, nurse) and that many patients "do not really understand the whole concept" (Kimberly, nurse), despite providing their consent for hospice services. Understanding includes knowledge about how much and what types of hospice services patients would receive, differences between hospice and routine home health (visiting nurse) services, and awareness of one's terminal prognosis. Team members attributed this limited understanding to physicians who were "not really clear" in explaining their reasons for referring them to hospice. Physicians who were less clear in explaining hospice to patients might describe hospice as a service to facilitate symptom management or provide additional in-home assistance. Team members suggested that, because patients with heart failure have historically been underrepresented in hospice, more education is needed for cardiologists and hospitalists about having open conversations with patients and families regarding the benefits and goals of hospice services. The limited explanations that some patients and families received from physicians about hospice led to confusion, including for some who "just think it's home care[horizontal ellipsis]and not realizing what it really means" (Kimberly, nurse). Robert (physician) described how patients would "hear they get additional help at home[horizontal ellipsis]without hearing the rest of it," alluding to a lack of comprehension among patients that they had a prognosis of 6 months or less to live. Team members worked to cultivate patients' knowledge through a "multistep conversation" involving talking to them about goals of care, advance directives, funeral arrangements, and the "process of dying" (Cynthia, nurse). Knowledge of the disease trajectory of heart failure and its associated symptoms, advance directives, medications, and therapies also provided material benefits to care. Examples included understanding how medications (eg, morphine) and therapies (eg, oxygen) could help patients manage heart failure symptoms or issues related to advance directives such as the implications of keeping a defibrillator activated alongside a standing "do not resuscitate" order.
On Board: Acceptance of Death and Alignment With Hospice Goals
Team members described having productive interactions with patients and family members who were "on board with hospice," represented by acceptance of death and dying and alignment with hospice goals. Hospice team members perceived acceptance of death and dying as facilitating hospice goal achievement because acceptance enabled "more of a dialogue" with team members, including communicating funeral and estate plans to social workers. Team members also mentioned prognostic awareness as promoting favorable attitudes toward advance directives, because team members perceived that these patients were "realistic" about "how much their body can do" (Susan, nurse).
Patients and families who team members described as not "on board" with hospice also expressed less acceptance and readiness for the end of life. Katherine (physician) stated that "it's not infrequent that we hear that 'I'm not going to die[horizontal ellipsis]this is not going to happen to me.'" John (nurse) described cases with "complete discord," characterized as disagreement among family members and an absence of "emotional readiness or openness" to hospice. Although Medicare hospice requirements dictate who is "clinically" appropriate for hospice care, team members noted that these same policies do not require patients to have advance directives in place upon enrollment and that patients and families may be admitted to hospice without being fully "on board." Team members associated misalignments between patient prognostic awareness and family readiness to forego conventional disease-directed treatments with an increased risk of disenrollment. Other signals that patients and family members were not "on board" with hospice included expressions of fear and denial about the future, when they "hear the word hospice and want to run the other way" (Kenneth, social worker) or where they "use hospice to get the service that they need, but not really[horizontal ellipsis]in terms of 'Oh, this is final, we are at the end'" (Lori, nurse). Team members described family members who "do not like to talk about death and dying" and who actively withheld prognostic and service information from patients for fear that sharing such information would hasten their death or cause depression. Tara (nurse) described how patient and family resistance to end-of-life conversations "makes it a little bit challenging and harder" to set goals of care and describe to them "what's coming." Team members viewed patients who expressed an openness to talking about death and dying with the hospice team and those who indicated goals of care that were aligned with the hospice philosophy as being "on board."
On the Same Page: Communication With the Hospice Team
Multiple team members mentioned understanding what information is important to communicate to the hospice team as an important factor in patient comfort and continuous hospice enrollment. Tara (nurse) described how patients and families "work very well with us" when "they know that any change [in symptoms] is significant." This sociocultural component is especially important for hospice patients with heart failure, who can experience rapid, sudden, and dramatic changes in their disease trajectory. Families and private aides often communicate patient symptoms to the hospice team and contribute to conversations on setting goals of care when the patient is unable to do so. Nancy (nurse) described how "getting on the same page" was dependent "on how verbal they [patients and families] are." Communication between patients, families, and the hospice team was necessary for building trust and rapport. Team members indicated that building trust with patients and family members was an iterative process that occurs "over the course of time." Establishing trust and rapport with patients and families enabled team members to "steer them into where you would like them to be" (Donna, nurse) so that they can "use the service in the way that it will be effective for them" (Kenneth, social worker). Dmitry (social worker) noted that "connecting [with patients] on a human personal level" allowed them to "talk about things that are more sensitive," especially among those who are "not ready to discuss death and dying, or funeral arrangements." Team members described establishing trust and rapport as more difficult when patients and families were "fiercely fighting" hospice, by pursuing curative treatments or declining advance directives.
Language and cultural concordance between patients and team members facilitated communication. Conversely, an inability to speak a patient's language presented an obstacle to therapeutic interactions and educational interventions: "If you do not speak the same language, you cannot really take care" (Susan, nurse). Maria (nurse) noted that "you cannot really provide 100% teaching if there's that barrier language [sic]." Team members relied upon interpreter lines as a "last resort" and as something that "does not really work when the patients are really sick." Team members perceived language barriers as an obstacle to building trust with patients and families and as limiting their ability to "understand the whole prognosis."
Like a Good Student: Symptom Management and Risk Reduction Practices
Team members described having productive interactions with patients with heart failure who proactively took medications, engaged in symptom self-management, and complied with medical directives. They expressed frustration with patients who refused hospice services, resisted medical advice, or failed to adjust their health behaviors after receiving self-management instructions. Amber (nurse) described 1 patient who was compliant with medical advice by illustrating how he was "following through like a good student," being "in-tune with his body," and "very receptive to teaching."
Patients with heart failure were labeled by hospice team members as being noncompliant in cases where they did not follow dietary recommendations to prevent fluid overload or were resistant to using morphine to manage pain and shortness of breath. Team members noted that fearfulness among patients and family members that "morphine is going to kill them" prevented some from administering the medication, precipitating a "very uncomfortable death." Team members would spend extra time with patients they viewed as being less compliant with medication regimens. Donald (nurse) described how he spent significant time "just getting their [medications] together, talking to their cardiologist, trying to figure out what they should be taking versus what they are taking." Team members viewed patients "willing to accept" medical equipment such as hospital beds, oxygen, and wheelchairs or walkers as better able to manage their conditions at home. Family caregivers were important partners in facilitating patient self-management, including with medication administration, reinforcing educational interventions, and learning about the patient's condition.
DISCUSSION
Our results revealed 5 overarching themes regarding components that members of the hospice interdisciplinary team perceived as shaping how patients with heart failure and their families navigate hospice care. These themes included (1) "looking out: caregiving support in hospice care," (2) "what it really means: patient knowledge and understanding of hospice," (3) "on board: acceptance of death and alignment with hospice goals," (4) "on the same page: communication with the hospice team," and (5) "like a good student: symptom management and risk reduction practices."
Team members described caregiving support as a crucial resource for hospice patients with heart failure to avoid crises and emergencies that lead to hospitalization and hospice disenrollment, events that are prevalent in this population.11 Family caregivers were viewed by the hospice team as being especially significant. Family caregivers provide a broad spectrum of tasks for community-dwelling older adults, including functional assistance, health care coordination, and disease management.28,29 Caregiving support becomes increasingly important to hospice patients during periods of policy change when agencies implement cost-cutting measures that push support personnel to the margins of care.30 Team members also acknowledged other components they felt helped patients with heart failure and their families navigate hospice, including a familiarity with hospice that helped them set realistic expectations for care, prognostic awareness and understanding of their condition, alignment with hospice goals of care, and alertness to changing symptoms that prompted communication. Principal among these components was the extent to which patients with heart failure and their families were viewed by hospice team members as being "on board" with hospice, identified by their awareness of dying and alignment with hospice philosophy. Previous qualitative studies have highlighted the range of awareness and understanding that persons with advanced heart failure have about the course of their illness-spanning from denial (eg, "I do not have an illness") to greater realization of one's terminal prognosis (eg, "if you have any sense[horizontal ellipsis]you know what they are saying to you").31 The limited awareness among patients with heart failure described by team members in our study is likely influenced by interactions with health care providers, including physicians, who may not clearly communicate prognostic information or reasons for referral to hospice. Mixed messages from physicians combined with fragmented care have been shown to undermine patient awareness.32
Team members also identified communication as an important component that impacted their ability to establish trust with patients and families. Communication plays an integral role in the provision of compassionate care, facilitating the ability of team members to notice subtle cues and details, establish connections, and respond to pain and suffering.33 Language concordance between patients, families, and team members facilitates communication and trust. Conversely, language barriers can inhibit educational interventions and symptom communication, as well as cause misunderstandings and frustration.34
CONCLUSION
On the basis of the findings of our study, we recommend that hospice agencies consider policies for augmenting services among patients with fewer resources and supports. For example, hospices could target continuous 24-hour support to patients without family caregivers or those with difficulties managing symptoms, not only for patients who are having an acute crisis. Continuous care services have been shown to mediate socioeconomic disparities in transfers between home and institutional hospice settings35 and could help to reduce unplanned hospitalizations. In addition, programs that provide in-home support to family caregivers, including respite and home-delivered meals, have been shown to reduce burden in caregivers of hospice patients.36 Spiritual support for patients with advanced illness, including visits from chaplain or clergy, could also serve as a bridge to help patients and families navigate end-of-life discussions with the hospice team.37 Additional strategies for improving hospice care include community outreach activities aimed at increasing awareness of hospice services, incorporating family members into the referral and treatment process, bridging language barriers for patients and families, and increasing cross-cultural sensitivity and diversity among hospice staff.34
Acknowledgment
The authors thank Frances Dooley for all of her assistance and support with coordinating research activities and recruiting study participants.
References