Benefits and challenges in use of a standardized symptom assessment instrument in hospice.

BACKGROUND: Hospices are now mandated to perform routine quality assessment under the final Medicare Hospice Conditions of Participation, creating an opportunity to explore standardized approaches to monitoring hospice quality. OBJECTIVE: We report hospice staff experiences using a standardized symptom assessment instrument, the Edmonton Symptom Assessment System (ESAS), in a pilot study designed to develop and test quality measures on symptom management. Use of the ESAS illustrates the benefits and challenges arising with standardized symptom assessment for quality monitoring in hospice. METHODS: We interviewed 24 individuals representing 8 hospices involved with the National Association for Home Care & Hospice Quality Assessment Collaborative, which pilot tested the ESAS as a source of standardized data for quality assessment. Transcripts were analyzed using the constant comparative method. RESULTS: Participants reported benefits and challenges with the ESAS. Benefits were that the ESAS was a brief and easy tool that identified areas of concern, engaged patients in symptom assessment, and monitored symptom changes over time. Additionally, the ESAS was viewed as a useful teaching tool for less experienced staff. Challenges included lack of clarity about inclusion rules and frequency of assessments; difficulty interpreting the numeric symptom rating scale, difficulty incorporating patient preferences with symptoms, and a sense that the use of standard assessment instruments was "unnatural." DISCUSSION: Recommendations to promote effective use of ESAS data for quality monitoring of hospice care include standardizing implementation procedures, adding patients' preferences to the ESAS form, and staff education to enhance comfort with the instrument before implementation.

Nurses' communication of prognosis and implications for hospice referral: a study of nurses caring for terminally ill hospitalized patients.

BACKGROUND: Although nurses are ideally situated to facilitate communication about prognosis and hospice referral among patients, patients' family members, and hospital staff, nurses do not always assume this task. OBJECTIVE: To identify common obstacles to nurses' discussions of prognosis and referral to hospice care with terminally ill patients in the hospital setting. METHODS: Data from a previous study were analyzed. In that study, a total of 174 experienced staff nurses working full-time in hospital practice areas where terminally ill patients routinely receive care at 6 randomly selected community hospitals in Connecticut participated. Each nurse completed a self-administered, cross-sectional survey. In this study, the open-ended responses of the nurses were examined by using content analysis and descriptive analysis. RESULTS: The most common obstacles were unwillingness of a patient or the patient's family to accept the prognosis and/or hospice, sudden death or noncommunicative status of the patient, belief of physicians' hesitance, nurses' discomfort, and nurses' desire to maintain hope among patients and patients' families. CONCLUSIONS: The reasons for noncommunication of prognosis and referral to hospice care by nurses are complex. Because limited discussion between clinicians and patients about prognosis and treatment options can reduce the likelihood of referral to hospice care, improved communication skills may result in more referrals and a smoother transition to hospice.

Depression among surviving caregivers: does length of hospice enrollment matter?

OBJECTIVE: Many terminally ill patients enroll in a hospice late in their illness, and recent data indicate decreasing lengths of hospice enrollment, yet we know little about the impact of hospice enrollment length on surviving caregivers. This is the first study the authors know of that examines the association between hospice enrollment length and subsequent major depressive disorder among surviving caregivers. METHOD: The authors conducted a prospective cohort study with 174 primary family caregivers of consecutively enrolled hospice patients with cancer between October 1999 and September 2001. Using data from in-person interviews at the time of enrollment and 6-8 months after the patient's death, they estimated with logistic regression the adjusted risk of major depressive disorder with the Structured Clinical Interview for the DSM-IV axis I modules based on the number of days of hospice care before death. RESULTS: Caregivers of patients enrolled with hospice for 3 or fewer days were significantly more likely to have major depressive disorder at the follow-up interview than caregivers of those with longer hospice enrollment (24.1% versus 9.0%, respectively), adjusted for baseline major depressive disorder and other potential confounders. CONCLUSIONS: The findings identify a target group for whom bereavement services might be most needed. The authors also suggest that earlier hospice enrollment may help reduce the risk of major depressive disorder during the first 6-8 months of bereavement, which raises concerns about recent trends toward decreasing lengths of hospice enrollment before death.

At the crossroads: making the transition to hospice.

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice declined 27%, from 26 to 19 days. In our prior study of 206 patients diagnosed with terminal cancer and using hospice, we found that one-third enrolled with hospice within 1 week prior to death. Late hospice enrollment can have deleterious effects on patients and their family members. The aim of the present study was to characterize common experiences of patients and primary family caregivers as they transition to hospice, focusing on caregiver perceptions of factors that might contribute to delays in hospice enrollment. METHODS: We conducted in-depth interviews with a purposive sample of 12 caregivers selected from a population of primary family caregivers of patients with terminal cancer who enrolled with hospice in Connecticut between September 2000 and September 2001. Respondents represented different ages, genders, and kinship relationships with patients. Respondents were asked about the patient's care trajectory, how they first learned about hospice, and their experiences as they transitioned to hospice. NUD*IST software was used for qualitative data coding and analysis. RESULTS: Constant comparative analysis identified three themes common to the experience of transitioning to hospice: (1) caregivers' acceptance of the impending death, (2) challenges in negotiating the health care system across the continuum of care, and (3) changing patient-family dynamics. SIGNIFICANCE OF RESULTS: Identification of these themes from the caregivers' perspective generates hypotheses about potential delays in hospice and may ultimately be useful in the design of interventions that are consistent with caregivers' needs.

Documentation of discussions about prognosis with terminally ill patients.

PURPOSE: Previous studies have suggested the importance of communicating with patients about prognosis at the end of life, yet the prevalence, content, and consequences of such communication have not been fully investigated. The purposes of this study were to estimate the proportion of terminally ill inpatients with documented discussions about prognosis, describe the nature and correlates of such discussions, and assess the association between documented discussions about prognosis and subsequent advance care planning. SUBJECTS AND METHODS: Inpatients (n = 232) at least 65 years old who had brain, pancreas, liver, gall bladder, or inoperable lung cancer were randomly selected from six randomly chosen community hospitals in Connecticut. The presence and content of discussions about prognosis, advanced care planning efforts, and sociodemographic and clinical factors were ascertained by comprehensive review of medical records using a standardized abstraction form. RESULTS: Discussions about prognosis were documented in the medical records of 89 (38%) patients. Physicians and patients were both present during the discussion in 46 (52%) of these cases. Time until expected death was infrequently documented. Having a documented discussion about prognosis was associated with documented discussions of life-sustaining treatments (adjusted odds ratio [OR] = 5.8; 95% confidence interval [CI]: 2.8 to 12.0) and having a do-not-resuscitate order (adjusted OR = 2.2; 95% CI: 1.1 to 4.2). CONCLUSIONS: Among terminally ill patients with cancer, discussions about prognosis as documented in medical charts are infrequent and limited in scope. In some cases, such documented discussions may be important catalysts for subsequent discussions of patient and family preferences regarding treatment and future care.

Nurses' use of palliative care practices in the acute care setting.

This study examines the reported use of palliative care practices by nurses caring for terminally ill patients in the acute care setting. Randomly selected nurses (n = 180) from six randomly selected hospitals in Connecticut completed a self-administered questionnaire. Factors associated with use of palliative care practices were examined by using bivariate and multivariate analyses. Most nurses surveyed (88.5%) reported using palliative care practices when caring for their terminally ill patients. Factors associated with greater use included greater knowledge about hospice, having practiced nursing for less than 10 years, and having had hospice training in the past 5 years. A substantial proportion of nurses reported that they never discuss hospice (51.7 per cent of nurses) and prognosis (26.6 per cent of nurses) with their terminally ill patients. Educational preparation (bachelor's degree versus less education) was not associated with greater use of palliative care practices. Palliative care practices are commonly used by nurses in the acute care setting. However, many report having limited training and substantial gaps in knowledge about hospice among this group of nurses, suggesting greater attention to palliative care and hospice may be warranted in nursing educational programs.

Attitudes about care at the end of life among clinicians: a quick, reliable, and valid assessment instrument.

Several initiatives to improve care at the end of life involve educational programs to influence clinicians' attitudes about care for patients with terminal illnesses. The objective of this research was to develop and test a short and easily administered instrument for measuring physicians' and nurses' attitudes towards care at the end of life. The instrument was tested using a cross-sectional study of 50 clinicians (25 physicians and 25 nurses) from general medicine, cardiology, oncology, and geriatric medicine. Both reliability and validity were assessed, and the instrument was found to have acceptable test-retest reliability and construct validity. Such an assessment instrument may be useful in evaluating the impact of initiatives to modify attitudes towards terminal care and in improving the quality of care at the end of life.

Referral of terminally ill patients for hospice: frequency and correlates.

BACKGROUND: Despite the central role of hospice in end-of-life care, little is known about the proportion of terminally ill patients referred for hospice and the physician factors associated with hospice referral. METHODS: Cross-sectional data from a self-administered survey of 231 physicians were used to estimate the proportion of terminally ill patients who were referred for hospice and to assess the independent effects of physician factors on hospice referral. RESULTS: On average, physicians reported referring about 55% of their terminally ill patients for hospice; 26.7% of the physicians referred less than one quarter of their terminally ill patients. Physician specialty, board certification, and physicians' knowledge level about hospice were independently associated with the proportions of terminally ill patients referred for hospice. CONCLUSION: Many terminally ill patients are not referred for hospice care and physician factors influence the use of hospice significantly. The study suggests effective factors and groups to target with interventions to enhance the appropriate use of hospice.

Experts probe issues around hospice care.

Roundtable discussion provided opportunity to explore the concept of hospice care from several different perspectives.