Dying right in theory and practice. What do we really know of terminal care?

Despite the widely held belief that hospices treat dying patients differently than conventional hospitals do, few systematic comparisons exist. We reviewed medical charts to study the terminal care practice at one hospital and two inpatient hospices. As expected, hospital patients had more diagnostic tests and higher laboratory charges than patients in either hospice did. Yet physicians' notes about patients' families or nonmedical aspects of illness were infrequent at all three institutions. Furthermore, analgesic use and the frequency of nurses' notes about nonmedical or family issues differed between hospices: sometimes one hospice, sometimes the other, resembled the hospital closely. Hence, some common assumptions about hospice care appear inaccurate. We believe that health professionals who attend dying patients--whether in hospitals or hospices--have an obligation to examine their terminal care practices critically and to develop standards appropriate for their institutions.     

How Does the Timing of Hospice Referral Influence Hospice Care in the Last Days of Life?

OBJECTIVES: To determine factors associated with the type of hospice care received in the last days of life and, in particular, how the timing of referral influences the use of continuous hospice home care and inpatient hospice care. DESIGN: Retrospective cohort study. SETTING: Twenty-one hospice programs across seven states under the ownership of one hospice parent provider. PARTICIPANTS: Hospice patients who were cared for and died between October 1, 1998, and September 30, 1999 (N = 28,747). MEASUREMENTS: Patient sociodemographic and clinical data were merged with use data from the provider's centralized information system to examine the factors associated with the differing levels of hospice care in the last week of life. In the last days of life, patients were classified as having received routine hospice home care only, having received continuous hospice home care, or having died in an inpatient hospice bed. RESULTS: Twenty-three percent of the patients received continuous hospice home care during the last week of life, and 34% died in an inpatient hospice bed. Patients with hospice stays of less than 7 days had a lower likelihood of receiving continuous hospice home care than those who had stays of more than 30 days (adjusted odds ratio (AOR) = 0.81, 95% confidence interval (CI) = 0.75-0.87). Patients with hospice stays of 14 days or less had a greater likelihood of dying in an inpatient hospice bed. Furthermore, patients with stays of less than 7 days who were referred from hospitals were six times likelier to die in an inpatient hospice bed than those who were referred from another source (AOR = 6.40, 95% CI = 5.74-7.14). Patients in nursing homes had a 93% lower likelihood of dying in an inpatient hospice bed than patients in the community without a live-in caregiver (AOR = 0.07, 95% CI = 0.03-0.19). Strong independent associations were observed between several other covariates and the study outcomes, particularly the covariates of which state hospice care was provided in and level of pain intensity. CONCLUSION: Findings suggest that continuous hospice home care in the last week of life is less likely to occur when patients have short hospice stays. Also, the probability of dying in an inpatient hospice bed is substantially greater for patients referred from hospitals and referred closer to time of death. Further work to determine the appropriateness of use of the different levels of hospice care is needed.     

Does Hospice Improve Quality of Care for Persons Dying from Dementia?

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members. DESIGN: Mortality follow‐back survey. SETTING: Death certificates were drawn from five states (AL, FL, TX, MA, and MN). PARTICIPANTS: Bereaved family members listed as the next of kin on death certificates when dementia was listed as the cause of death. MEASUREMENTS: Ratings of the quality of end‐of‐life care, perceptions of unmet needs, and opportunities to improve end‐of‐life care. Two questions were also asked about the peacefulness of dying and quality of dying. RESULTS: Of 538 respondents, 260 (48.3%) received hospice services. Family members of decedents who received hospice services reported fewer unmet needs and concerns with quality of care (adjusted odds ratio (AOR)=0.49, 95% confidence interval (CI)=0.33–0.74) and a higher rating of the quality of care (AOR=2.0, 95% CI=1.53–2.72). They also noted better quality of dying than those without hospice services. CONCLUSION: Bereaved family members of people with dementia who received hospice reported higher perceptions of the quality of care and quality of dying.     

The last 48 hours of life in long-term care: a focused chart audit

OBJECTIVES: As a component of palliative care educational program development, the faculty at the University of Ottawa Institute of Palliative Care wished to assess end-of-life care for patients in long-term care (LTC) settings to develop an educational strategy for physicians. DESIGN: A chart audit, focusing on the last 48 hours of life of residents dying in LTC facilities. SETTING: Five LTC facilities in a city in Canada. PARTICIPANTS: Residents who died in the LTC facilities in a 12-month period. Those who died suddenly (i.e., with no palliation period) or in a hospital were excluded. MEASUREMENTS: Symptoms highlighted in the literature as commonly found in the terminally ill and the matching treatments were recorded on an audit form created by the authors. Included were pain, dyspnea, noisy breathing, delirium, dysphagia, fever, and myoclonus. RESULTS: One hundred eighty-five charts were reviewed. A large number of patients were cognitively impaired. Cancer was the final diagnosis in 14% of cases. Respiratory symptoms were the most prevalent symptom, with dyspnea being first and noisy breathing third. Pain was second, with a prevalence similar to that found in studies of cancer patients. Dyspnea was not treated in 23% of the patients with this symptom; opioids were used in only 27% of cases with dyspnea. Ninety-nine percent of patients who experienced pain were treated for it. Less than one-third of patients with noisy breathing were treated. Delirium was not treated in 38% of the cases, and no anti-dopaminergic medications were administered. Nurses were primarily responsible for documenting end-of-life issues, supporting the families of the dying residents, and communicating with other team members. CONCLUSION: The focused chart audit identified the high prevalence of cognitive impairment in the patient population, which complicates symptom management. Respiratory symptoms predominated in the last 48 hours of life. This symptom profile differs from that of cancer patients, who, according to the literature, have more pain and less respiratory trouble. Management of symptoms was variable. Nurses played a crucial role in the care of dying residents through their documentation and communication of end-of-life issues. Appropriate palliative care education can provide knowledge and skills to all health-care professionals, including physicians, and assist them in the control of symptoms and improvement of quality of life for patients dying in LTC facilities.     

Differences in stroke care practices between regional and metropolitan hospitals

BACKGROUND: A recent audit of stroke care in major Australian metropolitan teaching hospitals showed considerable variation in care practices and uptake of evidence-based therapies. We could find no published data on stroke care practices in regional Australia. AIM: To compare acute stroke care practices at four regional hospitals with a metropolitan teaching hospital with a stroke unit. METHODS: The hospital medical records of 30 consecutive patients at each hospital (total 150 patients), with a discharge diagnosis of stroke, were retrospectively audited to identify differences in stroke care practices, including the use of investigations, acute interventions, and secondary prevention strategies, between the regional and metropolitan, and between smaller (less than 150 stroke admissions annually) and larger (more than 250 admissions annually) hospitals. RESULTS: Patients treated at regional or smaller hospitals were less likely to have a computed tomography head scan within 24 h of admission, carotid duplex, echocardiography, estimations of lipids and glucose, a swallow assessment, involvement of allied health professionals or be prescribed prophylaxis against deep vein thrombosis, compared to patients treated at metropolitan or larger hospitals. CONCLUSIONS: Significant differences in stroke care practices exist between regional/smaller and metropolitan/larger hospitals. Strategies designed to minimize variation in care practices, such as evidence-based care pathways, should be explored.     

Prevalence and structure of palliative care services in California hospitals

BACKGROUND: Most Americans die in hospitals where shortcomings in end-of-life care are endemic. Hospital-based palliative care services can improve the care of these patients, yet there are limited data regarding the availability of such services. We sought to determine the prevalence of palliative care services in California hospitals. METHODS: We conducted a cross-sectional survey of a random sample of 25% of all California hospitals. We recorded the percentage of hospitals reporting current or planned palliative care consultation services or inpatient palliative care units. RESULTS: We collected data from 107 (96%) of 112 hospitals. Only 17% of hospitals have a palliative care consult service, and 6% have an inpatient palliative care unit. Nearly all services are multidisciplinary. Twenty percent of hospitals have a contract to provide inpatient hospice beds, 19% have an outpatient-based hospice service affiliated with the hospital, and 74% offer bereavement services. Half of all palliative care services are funded exclusively by the hospital. Thirty-eight hospitals (36%) reported an interest in developing palliative care services. CONCLUSIONS: Few California hospitals currently have palliative care services, though more express interest in developing them. Bereavement and hospice services are more common and offer opportunities for increasing the number of palliative care services in hospitals. Further studies are needed to characterize palliative care services more fully and to assess the quality of care provided by these services.     

Palliative care for patients with dementia: a national survey

OBJECTIVES: 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. DESIGN: Telephone and Web‐based surveys. SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list. PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS: 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. CONCLUSION: 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.     

Iatrogenic events resulting in intensive care admission: frequency, cause, and disclosure to patients and institutions

PURPOSE: To identify the frequency and type of iatrogenic medical events requiring admission to an intensive care unit. To assess the consequences of iatrogenic medical events for patients and institutions. To assess the prevalence of disclosure of iatrogenic medical events to patients, surrogates, and institutions. METHODS: The project on Care Improvement for the Critically Ill enrolled 5727 patients to 8 intensive care units at 4 Boston teaching hospitals. To determine the nature, consequences, and disclosure of iatrogenic medical events, we did a retrospective chart review on all patients whose admission to an intensive care unit was precipitated by an iatrogenic event. RESULTS: Sixty-six patients (1.2 %) were identified by an intensive care unit's clinical team as having an iatrogenic medical event as the primary reason for admission to the unit. The majority (29, or 45%) of iatrogenic medical events were secondary to technical error, but a high percentage (21, or 33%) was due to iatrogenic drug events. Twenty-two (34%) cases were assessed by the investigators to have been preventable. In 60 (94%) cases there was no documentation in the patient's chart of communication to the patient regarding the reason for admission to the intensive care unit. In 11 (17%) cases there was documentation of a discussion with the surrogate about the reason for admission to the unit. In only 3 (5%) cases was there documentation that the patient or surrogate was informed that an iatrogenic medical event was the reason for admission to the intensive care unit. Incident reports or malpractice claims were filed in only 4 (6 %) cases. CONCLUSION: The frequency of iatrogenic medical events resulting in admission to intensive care units is lower than previous studies have reported. Iatrogenic drug events continue to be an important source of error. A considerable percentage of iatrogenic events may be preventable. Health care professionals rarely document disclosure of iatrogenic events to patients and surrogates.     

Benchmarking opioids in the last 24 hours of life

Background/Aims: Opioid dosages are titrated against symptoms with large variations between patients. For self‐assessment of prescribing, and for clinical governance, it is important to know the normal prescribing patterns across New Zealand (NZ). The aims of this study were to document opioids and dosages given to patients in the last 24 h of life to identify normal practice and allow prescribers to reflect on their own practice. Methods: A cross‐sectional benchmarking design with retrospective chart review was carried out among 14 NZ hospices. Data (n= 352) on opioid dosages were analysed for inter‐hospice variability (anova ). Parenteral morphine equivalent daily dose was used to analyse the dosage of different opioids. Results: Overall, 95% of dying patients received an opioid. Of these 71% received morphine, 17% fentanyl, 10% methadone 9.5% oxycodone. The dosages delivered are conservative compared with international data, with a geometric mean of 47.8 mg. There was no significant difference in mean dosages of opioids prescribed between hospice teams. There was, however, a significant difference between the dosage of opioid for those on the Liverpool Care Pathway for the Care of the Dying and those who were not (63.1–44.4 mg), and between those with malignant and non‐malignant disease (53.8–26.0 mg). Opioid footprints show different hospices have different patterns of opioid use. Conclusion: The parameters of what normal opioid prescribing is in the last days of life in NZ can be described from these data. There is value in repeating this exercise both for clinical governance and for professional reflection and self‐assessment.     

The Growth of Hospice Care in U.S. Nursing Homes

OBJECTIVES: To inform efforts aimed at reducing Medicare hospice expenditures by describing the longitudinal use of hospice care in nursing homes (NHs) and examining how hospice provider growth is associated with use. DESIGN: Longitudinal study using NH resident assessment (Minimum Data Set) and Medicare denominator and claims data for 1999 through 2006. SETTING: NHs in the 50 U.S. states and the District of Columbia. PARTICIPANTS: Persons dying in U.S. NHs. MEASUREMENTS: Medicare beneficiaries dying in NHs, receipt of NH hospice, and lengths of hospice stay were identified. The number of hospices providing care in NHs was also identified, and a panel data fixed‐effect (within) regression analysis was used to examine how growth in providers affected hospice use. RESULTS: Between 1999 and 2006, the number of hospices providing care in NHs rose from 1,850 to 2,768, and rates of NH hospice use more than doubled (from 14% to 33%). With this growth came a doubling of mean lengths of stay (from 46 to 93 days) and a 14% increase in the proportion of NH hospice decedents with noncancer diagnoses (69% in 1999 to 83% in 2006). Controlling for time trends, for every 10 new hospice providers within a state, there was an average state increase of 0.58% (95% confidence interval=0.383–0.782) in NH hospice use. Much state variation in NH hospice use and growth was observed. CONCLUSION: Policy efforts to curb Medicare hospice expenditures (driven in part by provider growth) must consider the potentially negative effect of changes on access for dying (mostly noncancer) NH residents.     

General medical care and the education of internists in university hospitals. An evaluation of the teaching hospital general medicine group practice program

Fifteen general internal medicine group practices in university teaching hospitals were studied to evaluate their primary care services and education. Data were collected over 9 months from physicians, patients, and medical records, and by observation. All institutions had closed their general medical clinics. Many patients being treated in group practices were very sick; 57% had hypertension; 21% were diabetic; and 45% could not work. Most were satisfied with their care. Care for acute problems from a health care provider in the practice was available quickly; regular physicians were harder to see. House staff and faculty spent little time in the practices. Few practices used teams; most used traditional attending and house staff models. Practice physicians could not easily determine when patients were seen in the institution's emergency department or were hospitalized. Quality of care standards were not uniformly met. Finally, the structure of academic centers appeared to inhibit the practices' performance, suggesting a need for further appraisal of relationships between university hospitals and their ambulatory care units.     

Is Hospice Associated with Improved End‐of‐Life Care in Nursing Homes and Assisted Living Facilities?

OBJECTIVES: To examine whether hospice enrollment for nursing home (NH) and residential care/assisted living (RC/AL) residents near the end of life is associated with symptoms and symptom management, personal care, spiritual support, and family satisfaction. DESIGN: Structured, retrospective telephone interviews with family and staff who attended to NH and RC/AL residents in the last month of life. SETTING: A stratified sample of 26 NH and 55 RC/AL facilities in four states. Participants: Family members (n=97) and long-term care (LTC) staff (n=104) identified as most involved in care of 124 residents who died over a 15-month period. MEASUREMENTS: A variety of reported measures of care and symptoms before death, including the Discomfort Scale for Dementia of the Alzheimer's Type. RESULTS: Of 124 decedents, 27 (22%) received hospice services. Dementia was less common in hospice enrollees than in decedents who did not receive hospice care. Hospice enrollees more often had moderate/severe pain and dyspnea and received pain treatment and were more likely to receive assistance with mouth care and eating and drinking. There were no differences related to unmet need, and observed differences were largely eliminated when comparisons were limited to residents whose deaths were expected. CONCLUSION: Rates of hospice use observed in this study (22%) were considerably higher than previously reported, although persons with dementia may continue to be underreferred. Hospice use is targeted to dying residents with higher levels of reported pain and dyspnea. Because difference in care largely disappears in cases when death was expected, LTC staff seem to be well positioned to provide end-of-life care for their residents and are advised to remain sensitive to instances in which death may be expected.     

Identification of older patients with heart failure who may be candidates for hospice care: development of a simple four-item risk score

OBJECTIVES: To identify predictors of 6‐month mortality in older patients with heart failure (HF) and to develop a risk score for identifying potential candidates for hospice care. DESIGN: Secondary data analysis of a previously conducted randomized, clinical trial. SETTING: Barnes‐Jewish Hospital, St. Louis, Missouri. PARTICIPANTS: Two hundred eighty‐two patients with HF aged 70 and older. INTERVENTION: Participants were randomized to conventional care or a multidisciplinary intervention designed to reduce rehospitalization. MEASUREMENTS: All‐cause 6‐month mortality. RESULTS: Patients were followed for up to 14 years; 43 (15.2%) died within 6 months of hospital discharge. Multivariate logistic regression analysis identified four independent predictors of 6‐month mortality: serum urea nitrogen of 30 mg/dL or greater (odds ratio (OR)=5.78, 95% confidence interval (CI)=2.65–12.66), systolic blood pressure less than 120 mmHg (OR=4.81, 95% CI=1.94–11.91), peripheral arterial disease (OR=3.09, 95% CI=1.26–7.58), and serum sodium less than 135 mEq/L (OR=2.27, 95% CI=0.98–5.27). Patients were stratified into four risk groups based on the presence or absence of these four risk factors. Six‐month mortality rates for patients with zero, one, two, or three or more risk factors were 3.7%, 16.3%, 41.0%, and 66.7%, respectively (P<.05). The presence of three or more risk factors was associated with a positive predictive value of 66.7% and a negative predictive value of 86.4%. CONCLUSION: Although additional studies are needed, these findings suggest that a simple four‐item risk score can identify older patients with HF at high risk of dying within 6 months. This may enable clinicians to better advise patients about prognosis, adjust management accordingly, and if appropriate, facilitate referral for hospice care. Conversely, patients with a more‐favorable prognosis may be suitable candidates for more‐aggressive interventions.     

Hospice care for patients with advanced lung disease.

Hospices are organized programs of support services for patients in the advanced stages of a terminal illness and their families. Although hospices serve dying patients regardless of diagnosis, limited available evidence suggests that these programs are relatively underutilized by patients dying of nonmalignant lung diseases. One explanation may be a lower awareness of hospice eligibility criteria and services among pulmonologists than oncologists. The unpredictability of death from advanced lung disease is another likely reason. Certain limitations on federal and private insurance coverage for patients with advanced lung disease probably contribute as well. For those patients who do enroll, hospice offers expert palliation of physical, psychological, social, and spiritual distress, as well as practical support for home care needs, hospitalization for short-term control of symptoms, and inpatient respite care for relief of home caregivers. Hospice workers view dying as an active phase of life filled with the pursuit of goals that patients and family members wish to complete before or shortly after the end of life. This article reviews hospice care in the United States with particular attention to eligibility criteria and services available for patients who are dying of an advanced lung disease. Specific recommendations are offered for referring respiratory disease patients to hospice programs.     

Differences between dedicated and not dedicated hospice physicians in symptoms and signs improvement among advanced cancer patients

The hospice and palliative care can improve the symptoms and signs of terminal cancer patients. The purposes of this study are how to improve terminally ill cancer patients’ symptoms and signs and how the dedicated palliative care service effects on these improvements.From January 2017 to March 2019, among 919 terminally ill cancer patients admitted to the palliative care units in 11 hospitals of South Korea, we analyzed 334 patients with prospective cohort method and categorized them into non-dedicated hospice care group of 234 and dedicated hospice care group of 100.Symptoms improvement of dyspnea, fatigue, drowsiness, and dry mouth during the first week of admission were respectively 298 (89.2%), 25 (7.5%), 204 (61.1%), 76 (22.8%). Signs improvement of myoclonus, respiratory secretion, leg edema, and ascites between admission and a week after were 5 (1.5%), 41 (12.3%), 47 (14.1%), 12 (3.6%). Significant differences between dedicated hospice care physician group and non-dedicated hospice care physician group were shown in drowsiness (67.5% vs 46%, P < .001) and respiratory secretion (15% vs 6%, P < .028). Compared to non-dedicated care group, the odds ratio for more than 2 symptoms or signs was 1.78 (95% confidence interval, 1.05–3.02) in the dedicated care group after adjusting confounding variables.In conclusion, terminally ill cancer patients who received palliative or hospice service showed significant improvement in symptoms and signs. And, family doctors (dedicated hospice physician group) performed better than oncologists (non-dedicated physician group).     

Auditing the process of care in a new geriatric unit.

To assess whether the objectives of a new Extended Care Unit were reflected in the care of the patients and in the outcome of that care, an audit of the patients' records was performed. The audit sample involved 101 geriatric patients who had been admitted to the Unit for rehabilitation therapy, and then discharged. The study included assessment of the records for compliance with individual audit criteria, examination of the records in terms of a composite audit score, and analysis of the relationship between these scores and three outcome indices. Although the audit did not show a significant correlation between recorded care processes and treatment outcomes, it did reveal the extent to which the Unit's goals were reflected in the care process.     

Hospice care and the emergency department: rules, regulations, and referrals

Emergency clinicians often care for patients with terminal illness who are receiving hospice care and many more patients who may be in need of such care. Hospice care has been shown to successfully address the multidimensional aspects of the end-of-life concerns of terminally ill patients: dying with dignity, dying without pain, reducing the burden on family and caregivers, and achieving a home death, when desired. Traditional emergency medicine training may fail to address hospice as a system of care. When they are unfamiliar with the hospice model, emergency clinicians, patients, and caregivers may find it difficult to properly use and interact with these care services. Potential poor outcomes include the propagation of misleading or inaccurate information about the hospice system and the failure to guide appropriate patient referrals. This article reviews the hospice care service model and benefits offered, who may qualify for hospice care, common emergency presentations in patients under hospice care, and a stepwise approach to initiating a hospice care referral in the emergency department.     

Physician consultation, multidisciplinary care, and 1-year mortality in Medicare recipients hospitalized with hip and lower extremity injuries

OBJECTIVE: To determine whether routine surgeon consultation with medicine specialists and multidisciplinary care conferences—potentially modifiable hospital characteristics—are associated with lower 1‐year mortality in older adults with hip and lower extremity injuries. DESIGN: Retrospective cohort study. SETTING: Oregon hospitals. PARTICIPANTS: Two thousand five hundred thirty‐eight Medicare recipients aged 67 and older hospitalized in Oregon hospitals in 2002 with hip or lower extremity injuries. MEASUREMENTS: Demographic, injury, comorbidity, and survival information were gathered from Medicare records for 2000 to 2003. All Oregon hospitals with a qualifying case were surveyed using a structured telephone interview to collect information about routine surgeon consultations and multidisciplinary care conferences for older adult orthopedic patients. Multivariable generalized estimating equation models were used to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for the associations between hospital characteristics and mortality. RESULTS: After adjusting for age, injury severity, comorbid conditions, trauma center status, and hospital annual volume of patients with hip fracture, the relative odds of dying in the year after injury for inpatients treated in settings with routine surgeon consultation with medical staff was 0.69 (95% CI 0.57–0.83) compared with patients not treated in such settings. Inpatient treatment in settings with routine multidisciplinary care conferences did not significantly affect the relative odds of dying in the year after injury (OR=1.06, 95% CI=0.89–1.26). CONCLUSION: Routine consultation by attending orthopedic surgeons with medicine or primary care specialists for Medicare inpatients is associated with better survival 1 year after injury.     

恶性肿瘤患者临终关怀护士人文关怀能力的质性研究

目的明确恶性肿瘤患者临终关怀护士人文关怀能力的内容。方法于2018年12月至2019年6月选取4所医院的17名肿瘤科护士为研究对象,对其进行半结构式深度访谈,采用扎根理论方法对资料进行分析。结果恶性肿瘤患者临终关怀护士人文关怀能力为灵性照护、预期性悲伤干预、居丧护理三大主题和12个次主题。结论有必要依据恶性肿瘤患者临终关怀护士人文关怀能力的内容培养临终关怀护士人文关怀能力,以满足患者需求。