A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature.
Materials and Methods:
Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract.
During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain.
While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model.
Cancer pain; Palliative care research; Reporting characteristics
To determine the degree to which patients and families enrolled with hospice received services across key categories of palliative care, the extent of hospice-level variability in services delivered, and changes over time in services delivered.
Nationally representative sample of 9,409 discharged patients from 2,066 hospices in the National Home and Hospice Care Survey.
Observational, cross-sectional study conducted from 1992 to 2000. The primary outcome is the receipt of services across five key categories of palliative care: nursing care, physician care, medication management, psychosocial care, and caregiver support.
Data were obtained via interview with the hospice staff member most familiar with the patient's care, in conjunction with medical record review.
In 2000, 22 percent of patients enrolled with hospice received services across five key categories of palliative care. There was marked variation across hospices in service delivery. One-third of hospices provided patients and families services in one or two of the five key categories of palliative care, whereas 14 percent of hospices provided services across five key categories of palliative care. In multivariable analysis, the odds of receiving any additional hospice service was significantly greater in later compared with earlier years (odds ratio = 1.10, 95 percent confidence interval 1.01–1.20). Nevertheless, the percentages of patients in 2000 receiving medication management (59 percent), respite care (7 percent), and physician services (30 percent) remained low.
Hospice care for patients and families varies substantially across hospices. Whereas some hospices provide services across the key categories of palliative care, other hospices do not provide this breadth of services. Greater understanding of the causes of variation in service delivery as well as its impact on patient and family outcomes and satisfaction with end-of-life care is a critical subject for future research. Changes in Medicare's reimbursement policies may help hospices increase the range of services provided to patients and families.
Hospice; palliative care; Medicare Hospice Benefit
The context for nursing informatics research has changed significantly since the National Institute of Nursing Research-funded Nursing Informatics Research Agenda was published in 1993 and the Delphi study of nursing informatics research priorities reported a decade ago. The authors focus on three specific aspects of context - genomic health care, shifting research paradigms, and social (Web 2.0) technologies - that must be considered in formulating a nursing informatics research agenda. These influences are illustrated using the significant issue of healthcare associated infections (HAI). A nursing informatics research agenda for 2008–18 must expand users of interest to include interdisciplinary researchers; build upon the knowledge gained in nursing concept representation to address genomic and environmental data; guide the reengineering of nursing practice; harness new technologies to empower patients and their caregivers for collaborative knowledge development; develop user-configurable software approaches that support complex data visualization, analysis, and predictive modeling; facilitate the development of middle-range nursing informatics theories; and encourage innovative evaluation methodologies that attend to human-computer interface factors and organizational context.
Gathering first hand or reported information about patients in the final stages of terminal cancer is difficult due to patient frailty, cognitive impairment, excessive fatigue and severity of illness, as well as gatekeeping by hospice providers and caregivers, and highly variable documentation practices.
We sought to further understand and elucidate end-of-life experiences in older cancer patients through the application of validated tools employed in the hospice setting. This paper summarizes data collected about pain, non-pain symptoms, and other aspects of quality of life (QOL) as reported by older hospice patients or their caregivers during the first two weeks of hospice care.
Data was collected from an ongoing IRB approved research project with 94 older adults with cancer or their caregivers receiving service in a home setting from 14 Midwestern hospices. Participants completed one or two telephone interviews. Instruments used to gather information include the Brief Pain Inventory (BPI) and the Brief Hospice Inventory (BHI).
Data analysis showed mean “worst pain” ratings significantly decreased from interview 1 to interview 2 and pain reports were significantly correlated with fatigue, anxiety, appetite, comfort, symptom control and overall QOL.
Our findings reinforce previously held views that older patients with cancer experience pain and non-pain symptoms. And both pain and non-pain symptoms can impact and confound the treatment of other symptoms and interfere with the patient's overall QOL. The results of this study support the assertion that hospice care can have a positive impact on pain severity and related suffering, as well as patient QOL as death approaches.
older adult; cancer pain; pain assessment; pain management; quality of life; hospice
As patients are cared for in their home by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice’s reputation as the gold standard for terminal care, there is still a need to improve pain management practices including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver/patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire (CPMQ). Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the CPMQ by the research team, there was only one discussion of caregiver pain related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.
Caregiver Pain Medicine Questionnaire (CPMQ); hospice; pain management; interdisciplinary teams
Informal caregivers of hospice patients experience multiple stressors that can negatively impact physical, psychological, and emotional health. The goal of this qualitative study was to understand caregivers' needs to inform the feasibility, structure, and content of a telephone-based counseling intervention.
Focus groups and interviews with 36 former hospice caregivers and 11 hospice staff from 6 hospices were conducted. Interviews and focus groups were audio-recorded, transcribed, and analyzed using a constant comparative approach.
Key content areas included coping, emotional support, self-care, logistical issues, and bereavement. Respondents supported telephone-based counseling, appreciating its relative anonymity and convenience. It was recommended that calls be initiated by the counselor, on a weekly basis, and that one counselor be assigned to each caregiver. Hospice staff emphasized the need to coordinate telephone counseling with hospice care, scheduling around and communicating with hospice staff. Most caregivers indicated that they would participate in telephone-based counseling were it available; hospice staff thought that half of caregivers would participate. A pervasive theme was that “there can never be enough support for a caregiver.”
Informal caregivers of hospice patients have support needs that are amenable to telephone-based counseling designed to be complementary to existing hospice services. Based on these qualitative findings, we are pilot-testing a telephone-based cognitive-behavioral stress management program for informal caregivers of hospice patients.
Conducting scientific research within a clinical practice area presents a variety of challenges. When the specialty area is hospice and palliative care, the collaborative task is particularly daunting. In this paper, we describe an ongoing study being conducted as a partnership between the University of Illinois at Chicago and a large metropolitan hospice organization. Our research is focused on engaging patients and their caregivers in a study measuring the effects of massage on cancer pain. The purpose of this paper is to describe both the lessons learned and the benefits accrued from collaboration between hospice practitioners and academic researchers. We present these process findings as guideposts for others considering end-of-life or palliative care research. Upon completion of the study in 2009, we will disseminate outcome findings in future papers.
Cancer pain; hospice; massage
During the twentieth-century, dramatic changes in the manner and location of care for the dying resulted in the conception and birth of the modern American hospice movement. Idealistic nurses, clergy, and others concerned about the plight of terminally ill cancer patients launched hospice as a necessary health care reform. As new hospice programs opened across the country, the idealism of the early leaders gave way to more pragmatic issues such as program viability. As hospice was studied and integrated into the health care system, it came to be redefined by the politics of health policy and the health care industry. As a result, there is a disarticulation between the needs of seriously ill persons and their families and the health care that is available to them. Important lessons can be learned from the history of the Medicare hospice benefit to help guide current palliative care policy initiatives. While formalized reimbursement for hospice enhanced organizational sustainability, many critical issues remain.
policy; hospice; Medicare; nursing; outcomes
Systematic assessment is vital to palliative care, but documentation confirming completion of systematic assessment in hospice settings is often inadequate or absent.
To determine the efficacy of systematic feedback from standardized assessment tools for hospice patient/caregiver dyads in improving hospice outcomes compared to the usual clinical practice.
The sample of patients (n=709) newly admitted to hospice homecare in two hospices had designated family caregivers. The interdisciplinary teams (IDT) caring for these dyads were randomly assigned to either experimental (n=338) or control (n=371) conditions. Data were collected from both groups of dyads using standardized assessments on admission, and one week after each of the first two IDT meetings in which these dyads were discussed. The experimental intervention consisted of reporting data from the standardized assessments to the IDTs.
Results showed improved patient depression (p.<.001) as a result of the intervention, and improvement in both groups in patient quality of life (p.<.001). No other patient outcomes (symptom distress, spiritual needs) or caregiver outcomes (depression, support, spiritual needs) were significantly different.
Assessment of depression added to usual care probably had an effect because it is not normally a focus of hospice staff. Hospice care was so good during the study that overall quality of life improved as a result of standard care and left little room for improvement in other variables.
Implications for Practice
Systematic assessment of depression is needed in hospice patients. No caregiver variables changed, which may indicate a need for a focus on caregivers.
This paper presents the theoretical framework and rationale for the ACTive intervention which proposes the use of video technology to facilitate patient and family participation in hospice interdisciplinary team meetings where plans of care are determined. It is surmised that patient and family involvement will improve communication and compliance in hospice care. An analysis of data from a pilot project of the ACTive intervention was conducted to explore active participation among family caregivers and the hospice team. Through the use of videophone technology caregivers participated in video-recorded team meetings. The actual communication behaviors of caregivers and team members were analyzed for active participation. Findings revealed that team–prompted caregiver participation was most common, however, team use of supportive talk in this context was considerably less frequent. The study also found that the team’s use of active participation behaviors elicits caregiver active participation behaviors. The results of this study suggest the intervention was an effective way to involve family caregivers as active participants in the designing of care for their loved one. Findings also suggest that hospice staff would benefit from education and training on best practices for communicating with caregivers in the team meeting setting.
Managing and administering medications to relieve pain and symptoms are common, important responsibilities for informal caregivers of patients receiving end-of-life care at home. However, little is known about how hospice providers prepare and support caregivers with medication-related tasks.
This qualitative study explores the key approaches that hospice providers employ to facilitate medication management for caregivers.
Semi-structured, open-ended interviews were conducted with 22 providers (14 nurses, four physicians, and four social workers) from four hospice organizations around an urban setting in the Midwest U.S.
Based on the interviews, the following five key approaches emerged, constituting how the hospice team collectively helped caregivers manage medications: 1) establishing trust; 2) providing information; 3) promoting self-confidence; 4) offering relief (e.g., provided in-home medication assistance, mobilized supportive resources, and simplified prescriptions); and 5) assessing understanding and performance. Each hospice discipline employed multiple approaches. Nurses emphasized tailoring information to individual caregivers and patients, providing in-home assistance to help relieve caregivers, and assessing caregivers’ understanding and performance of medication management during home visits. Physicians simplified medication prescriptions to alleviate burden and reassured caregivers using their perceived medical authority. Social workers facilitated medication management by providing emotional support to promote self-confidence and mobilizing resources in caregivers’ support networks and the community at large.
Hospice nurses, physicians, and social workers identified distinct, yet overlapping, approaches in aiding caregivers with medication management. These findings emphasize the importance of teamwork among hospice providers. Future research should investigate how common, standardized, effective and efficient these approaches are in practice.
Hospice home services; family caregivers; pain management
The vast majority (80%) of care provided to hospice patients is given by informal and unpaid caregivers, who are often family members. They may be responsible for everything from management of the household and finances to medical and personal care. Providing this kind of care to a loved one at the end of life can contribute to increased stress, health problems, and decreased quality of life.
Hospice social workers referred caregivers identified as needing additional support into a special project that funded services not covered by hospice and that the family could not afford to purchase. There were no restrictions on the types of services that could be requested. The Pearlin role overload measure (ROM) was administered and the family selected a service provider from an approved list of agencies. Upon completion of the service period, the ROM was re-administered. Use of the hospice respite benefit by any hospice patient during this study was compared with use before the project began.
Self-reported caregiver stress, as measured by the Pearlin ROM pre- and post-services, decreased by 52% (t122 = 10.254; p < 0.0001). Use of the hospice respite benefit requested by any hospice patient caregiver decreased during the project period (χ2, p < 0.02), and when respite was requested fewer days were used as compared with the same time period prior to the project (χ2, p < 0.0043).
The project results show that offering such services relieved caregiver stress, reduced use of respite, and reduced the number of respite days used.
Hospice care focuses on palliation and the relief of suffering aiming to improve the quality of patients’ last days. Telemedicine is considered to be a tool that can address challenges such as staff shortage, funding limitations and limited access to services in rural areas. Hospice services via telemedicine can be delivered directly into a patient’s home by utilizing videoconferencing technology. The Missouri Telehospice Project aims to investigate the impact of a telehospice model on satisfaction with delivered care, caregiver burden, crisis prevention rates and overall cost of delivered care. Five urban and rural hospice agencies in Missouri are participating. A needs assessment study was conducted where hospice staff members responded to a set of questions within focus group and interview sessions providing feedback about the design, type of technology, frequency of usage and perceived impact on quality of hospice care.
Disparities in access to health care extend to end-of-life care. Lack of access to hospice mirrors lack of access to health maintenance and primary care. Patients who are served by hospice nationally are disproportionately white and likely to reside in economically stable communities. In many urban low-income communities, less than 5% of decedents receive hospice care in the last 6 months of life. This review focuses on barriers to palliative care and hospice in urban, predominantly low-income communities, including cultural and reimbursement factors and the paucity of hospice providers, outreach projects, and in-patient hospice beds in urban communities. This review will also address some strategies that are being implemented by hospices locally and nationally to overcome demographic barriers to hospice care.
End-of-life; Health disparities; Hospice; Urban
The National Quality Forum (NQF) identified hospice services as a national priority area for healthcare quality improvement and endorsed a set of preferred practices for quality palliative and hospice care. This study reports the first national data regarding hospices’ self-reported implementation of the NQF preferred practices and identifies hospice characteristics associated with more comprehensive implementation.
We conducted a national cross-sectional survey of a random sample of hospices (n=591; response rate 84%) from September 2008 to November 2009. We evaluated the reported implementation of NQF preferred practices in the care of both patients and families.
The range of reported implementation of individual NQF preferred practices among hospices was 45–97%. Twenty-one percent of hospices reported having implemented all patient-centered preferred practices, 26% all family-centered preferred practices, and 10% all patient and family-centered preferred practices. In adjusted analyses, large hospices (100 or more patients per day) were significantly more likely than small hospices (less than 20 patients per day) to report having implemented all patient-centered preferred practices (OR=2.46, 95%CI 1.24, 4.90) and all family-centered preferred practices (OR=1.88, 95%CI 1.02, 3.45). Similarly, chain-affiliated hospices were significantly more likely than free-standing hospices to report having implemented all patient-centered preferred practices (OR=2.45, 95%CI 1.23, 4.87) and all family-centered preferred practices (OR=1.85, 95%CI 1.01, 3.41).
Hospices’ reported implementation of individual preferred practices for palliative and hospice care quality was high; however, reported comprehensive implementation of preferred practices was rare and may be difficult to achieve for small, free-standing hospices.
hospice & palliative medicine; quality
A comparative case study comparing the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone, was conducted. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication.
This case study compared the delivery of a psychoeducational intervention with hospice caregivers, delivered in person and via videophone. This study demonstrates the feasibility of using telehealth tools to deliver interventions in hospice and identified ways or protocols that can be adapted for telehealth delivery. The caregiver expressed satisfaction with the telehealth experience, supporting the value of video communication. The results have laid the framework for further implementation of an ongoing, randomized clinical trial examining the use of telehealth tools for delivery of psychoeducational interventions with hospice caregivers.
hospice; telehealth; videophones; psychoeducational interventions; problem-solving therapy
BACKGROUND: Despite palliative care being an accepted role of community hospitals, there is little quantitative evidence of the type of care provided. AIM: To obtain quantitative data comparing palliative cancer care provided in 12 community hospitals in 10 towns (approximately 350 medical beds) and in a consultant-led purpose-built hospice (12 beds). METHOD: Retrospective medical and nursing case note analysis over one year of cancer deaths in the former Exeter Health District. RESULTS: A total of 171 community hospital and 116 hospice casenotes were analysed. Hospice patients had significantly different reasons for admission compared with community hospital patients (P < 0.001), with pain and symptom control being more frequent and terminal nursing care less frequent reasons for admission to the hospice. Community hospital length of stay was significantly longer than hospice length of stay (P = 0.002; mean community hospital stay 16 days, mean hospice stay eight days). Symptoms on admission differed significantly. Drug prescribing on admission and at death and indications of active treatment of symptoms were broadly similar. Community hospital patients received more investigations than hospice patients, linked to the observation that around one in ten community hospital patients were admitted for investigation and active treatment. Community hospital medical notes were significantly less likely to meet minimum quality standards than were hospice notes (81/171 vs. 18/116; P < 0.001), with major deficiencies in the areas of examination, progress reporting, and absence of confirmation of death. CONCLUSIONS: This study confirms the role of community hospitals in palliative terminal cancer care. Differences in care between community hospitals and a hospice have been demonstrated that may reflect either different admission populations to each setting or differences in the way care was delivered.
Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of lifeworld are presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed.
Lifeworld; Hospice; Palliative care; Ethics in end-of-life-care; Evidence-based
Inclusion of patients and caregivers in decisions related to the delivery of care is inherent in the hospice philosophy. Telemedicine technologies offer a potential solution to the challenges presented by the geographic distance between team meetings and the home environment. While inclusion requires additional coordination by the hospice team, it also offers an important opportunity to improve communication between the team and the patient and family. A modified conceptual model based on two previous frameworks is outlined to support patient and family involvement in hospice team meetings. Further research is suggested to determine the structural feasibility of patient and family involvement via videophone as well as the structural and procedural changes resulting from this inclusion. Finally, clinical outcomes and family evaluation of the inclusion experience need to be thoroughly researched before final conclusions may be reached.
Hospice; Interdisciplinary Teams; Patient and Family Involvement
The length of hospice stay, as an indicator of timing of hospice referral, is an important outcome to examine in end-of-life care because it is relevant to the quality and cost efficiency of end-of-life care that patients receive. Although the majority receives nonmedical care from informal caregivers, many elderly hospice users rely on paid caregivers or staff of residential facilities.
This study examined whether availability of informal primary caregiver interact with ethnicity to affect length of hospice stay.
A retrospective cross-sectional study.
Data on 3024 hospice patients aged 65 and older discharged between 1997 and 2000 was extracted from the National Center for Health Statistics' National Home and Hospice Care Survey (NHHCS).
Length of hospice stay prior to death or discharge.
Survival analysis revealed that among patients with formal caregivers, minority patients were likely to have significantly shorter hospice stays than non-Hispanic whites. There were no significant ethnic differences in length of stay among patients with informal caregivers.
Our findings suggest that ethnic differences in length of stay should be discussed in terms of type of caregiver, not just type of setting, since patients in residential facilities can have informal primary caregivers who are vigilant advocates for their dying relatives. We discuss possible reasons for the influence of having formal caregivers on length of stay of minority elders.
To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC.
Telephone and Web-based surveys.
U.S. hospice and PC programs from the National Hospice and Palliative Care Organization’s program list.
Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC.
A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC.
Ninety-four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end-of-life care.
Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.
dementia; hospice; palliative care
Medicare’s per diem payment structure may create financial incentives to select patients who require less resource-intensive care and have longer hospice stays. For-profit and nonprofit hospices may respond differently to financial incentives.
To compare patient diagnosis and location of care between for-profit and nonprofit hospices, and examine whether number of visits per day and length of stay vary by diagnosis and profit status.
Design, Setting, and Patients
Cross-sectional study using data from the 2007 National Home and Hospice Care Survey. Nationally-representative sample of 4705 patients discharged from 1,036 hospice agencies.
Main Outcome Measures
Diagnosis and location of care (home, nursing home, hospital, residential hospice, or other) by hospice profit status. Hospice length of stay and number of visits per day by various hospice personnel.
For-profit hospices, compared to nonprofits, had a lower proportion of patients with cancer (34.1% [29.9–38.6%] vs. 48.4% [45.0–51.8%]) and a higher proportion of patients with dementia (17.2% [14.1–20.8%] vs. 8.4% [6.6–10.6%]) and other non-cancer diagnoses (48.7% [43.2–54.1%] vs. 43.2% [40.0–46.5%]) (adjusted P<.001). After adjustment for demographic, clinical, and agency characteristics, there was no significant difference in location of care by profit status. For-profit hospices, compared to nonprofits had a significantly longer length of stay (median 20 [6,88] vs. 16 [5,52] days, adjusted P=.01) and were more likely to have patients with stays >365 days (6.9% [5.0–9.4] vs. 2.8% [2.0–4.0]) and less likely to have patients with stays <7 days (28.1% [23.9–32.7%] vs. 34.3% [31.3–37.3%]) (adjusted P=.004). Compared to cancer patients, those with dementia or other diagnoses had fewer visits per day from nurses (0.58 [0.34,0.94] vs. 0.38 [0.19,0.65] and 0.41 [0.26,0.79], adjusted P=.002) and social workers (0.15 [0.07, 0.31] vs. 0.07 [0.04, 0.21] and 0.11 [0.06, 0.24], adjusted P<.001).
Compared with nonprofit hospices, for-profit hospices had a higher percentage of patients with diagnoses associated with lower skilled needs and longer lengths of stay.
We examined the level of hospice knowledge of caregivers of minority elderly hospice patients and determined how it influences the hospice enrollment decision and the decision on the use of hospice services after enrollment. Based on qualitative analysis of medical records and interviews with caregivers of minority elderly hospice patients who received personal care from paid caregivers (eg, other than family caregivers), we found that hospice knowledge increased access to hospice among minority patients who otherwise would not opt for hospice or enroll too late for comprehensive hospice care services. Furthermore,the highest level of knowledge—acquired through caregivers' health care occupations—appears to influence hospice care after hospice enrollment. Caregivers with that level of knowledge made requests for changes in site of care and/or additional services that may enhance the quality of hospice care that their loved ones receive.
hospice knowledge; caregiver issues; quality of hospice care Introduction
Approximately 25% of all US deaths occur in the long-term care setting, and this figure is projected to rise to 40% by the year 2040. Currently, there is limited information on nonpain symptoms and their appropriate treatment in this setting at the end of life.
This study evaluated the prevalence of undertreatment of nonpain symptoms and factors associated with undertreatment in older nursing home hospice/palliative care patients.
This study used a cross-sectional sample of older (≥65 years) hospice/palliative care patients to represent all patients from the 2004 National Nursing Home Survey (NNHS) funded by the Centers for Disease Control and Prevention. Nonpain symptoms were determined from facility staff, who used the medical records to answer questions about the residents. Data on medication use were derived from medication administration records. Undertreatment was defined as the omission of a necessary medication for a specific nonpain symptom and was evaluated as a dichotomous variable (yes = the nonpain symptom was not treated with a medication; no = the nonpain symptom was treated with a medication). Cross-sectional bivariate analyses were conducted using χ2 and regression coefficient tests to determine factors potentially associated with undertreatment of nonpain symptoms.
The cross-sectional sample included 303 older nursing home hospice/palliative care patients from among the 33,413 (weighted) patients from the 2004 NNHS. Overall, most of the patients were white (91.4% [277/303]) and female (71.9% [218/303]), and nearly half were aged ≥85 years (47.9% [145/303]). One or more nonpain symptoms occurred in 82 patients (22.0% weighted). The most common nonpain symptoms (weighted percentages) were constipation/fecal impaction in 35 patients (8.8%), cough in 34 patients (9.2%), nausea/vomiting in 26 patients (7.2%), fever in 11 patients (3.1%), and diarrhea in 9 patients (1.9%). Medication undertreatment of any of the above symptoms was seen in 47 of 82 patients (60.0% weighted), ranging from a low of 26.4% for constipation/fecal impaction to a high of 88.0% for nausea/vomiting. Undertreated patients had significantly more problems with bed mobility (n [weighted %], 43 [92.3%] vs 21 [67.2%]; P = 0.013), mood (21 [44.7%] vs 7 [19.7%]; P = 0.017), and pressure ulcers (12 [25.7%] vs 2 [6.1%]; P = 0.023) than did treated patients. The undertreated group also had a significantly greater number of secondary diagnoses (weighted mean [SD], 6.5 [0.7] vs 5.2 [0.5]; P = 0.004) but had a shorter length of stay in hospice/palliative care (120.5 [20.1] vs 219.4 [51.8] days; P < 0.001) or in the nursing home (552.0 [96.5] vs 1285.4 [268.3] days; P = 0.001).
The prevalence of nonpain symptoms was low (22.0% weighted) in older nursing home hospice/palliative care patients. However, medication undertreatment of nonpain symptoms was seen in more than half of these patients. Future quality-improvement initiatives for nursing home hospice/palliative care patients are needed beyond the management of pain symptoms.
long-term care; nursing homes; palliative care; hospice care; aged
The goal of this study was to explore empathic communication opportunities presented by family caregivers and responses from interdisciplinary hospice team members.
Empathic opportunities and hospice team responses were analyzed from biweekly web-based videoconferences between family caregivers and hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data.
Data analysis identified 270 empathic opportunity-team response sequences. Caregivers expressed statements of emotion and decline most frequently. Two-thirds of the hospice team responses were implicit acknowledgments of caregiver statements and only one-third of the team responses were explicit recognitions of caregiver empathic opportunities.
Although hospice team members frequently express emotional concerns with family caregivers during one-on-one visits, there is a need for more empathic communication during team meetings that involve caregivers.
Hospice clinicians should devote more time to discussing emotional issues with patients and their families to enhance patient-centered hospice care. Further consideration should be given to training clinicians to empathize with patients and family caregivers.
empathy; hospice; family caregiver