An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional terminal care. The National Hospice Study was a multi-site, quasi-experimental study to compare the experiences of terminal cancer patients and their families in hospices with those of similar patients and families receiving conventional terminal care. The results indicate that, although care is different in hospices, e.g. lesser utilization of aggressive interventional therapy and diagnostic testing, patients' quality of life is similar in the hospice and conventional care systems with the exception of pain and symptom control, which may be better in the inpatient hospice setting. Hospice patients are more likely to die at home and their families are satisfied with that outcome. Otherwise, no consistent superiority of family outcome was associated with the hospice approach. The cost of hospice care is less than that of conventional terminal care for patients in hospices without inpatient facilities, but the cost of hospice appears to be equivalent to conventional care for patients in hospices having beds.     

Do Rural Elders Have Limited Access to Medicare Hospice Services?

OBJECTIVES: To examine whether there are urban-rural differences in use of the Medicare hospice benefit before death and whether those differences suggest that there is a problem with access to hospice care for rural Medicare beneficiaries. DESIGN: Observational study using 100% of Medicare enrollment, hospice, and hospital claims data. SETTING: Inpatient hospitals and hospices. PARTICIPANTS: Persons aged 65 and older in the Medicare program who died in 1999. MEASUREMENTS: Rates of hospice use before death and in-hospital death rates were calculated. RESULTS: In 1999, there were 1.76 million deaths of Medicare beneficiaries aged 65 and older. Hospice services were used by 365,700 of these beneficiaries. Rates of hospice care before death were negatively associated with degree of rurality. The lowest rate of hospice use, 15.2% of deaths, was seen in rural areas not adjacent to an urban area. The highest rate of use, 22.2% of deaths, was seen in urban areas. Rural areas adjacent to urban areas had an intermediate level of hospice use (17.0% of deaths). Hospices based in rural areas had a smaller number of elderly patients each year than hospices based in urban areas (P<.001) and were more likely to have very low volumes (average daily census of three patients or less). CONCLUSION: The consistently lower use of Medicare hospice services before death and smaller sizes of rural hospices suggest that the combination of Medicare hospice payment policies and hospice volumes are problematic for rural hospices. Adjusting Medicare payment policies might be a critical step to assure availability of hospice services forterminally ill beneficiaries regardless of where they live.     

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.     

Availability of data when heart failure patients are admitted to hospice

Guidelines recommend hospice care for patients with advanced heart failure (HF) who are approaching end of life. However, little is known about the data available when HF patients are admitted to hospice. This pilot study surveyed the staff from 100 hospices in the United States and Canada about how frequently data were provided to or obtained by the hospice when admitting HF patients and how important they perceived the data. The survey response rate was 66%. Overall, data were less often provided or obtained than rated important (aggregate mean difference, P<.001, r=.75). Data important to prognostication or ongoing care were provided to or readily obtained by the hospices for blood pressure (50.0%), left ventricular ejection fraction (EF) (50.0%), edema (58.3%), HF medications, symptoms of dyspnea (63.2%), chest pain (57.2%), common comorbidities, and pacemaker (69.6%) or other devices (60.0%). Approximately half of the time, hospices reported that they rarely or never received information about medication intolerance. Significant amounts of clinically valid data are not provided to or obtained by hospice providers when admitting HF patients. Investigations are needed to corroborate these findings, understand information transfer at transitions in care, and to determine the impact of admission data on hospice care for HF patients. Congest Heart Fail.     

Audit of the care of the dying in a network of hospitals and institutions in Queensland

Background: Most Australians die in institutions and there is evidence to suggest that the care of these patients is not always optimal. Care pathways for the dying have been designed to transfer benchmarked hospice care to other settings (e.g. acute hospitals and residential age‐care facilities) by defining goals of best care, providing guidelines to provide that care and documenting outcome. Method: A retrospective audit was undertaken across a network of health‐care institutions in Queensland. The 18 goals considered essential for the care of the dying within the Liverpool Care Pathway were taken as a benchmark. Documentation of achievement of each of these goals was sought. Results: The notes of 160 patients who had died in eight institutions (four hospitals, three hospices, one nursing home) were reviewed. Several areas for improvement were identified, particularly in those goals relating to communication, resuscitation orders and care after death. Few units documented the provision of written information to families. Most patients were prescribed medications in anticipation of pain and agitation but less were prescribed drugs for other common symptoms in the dying. Most of the goals were achieved in a higher percentage of cases in hospice units. Marked differences in practice were noted between different institutions. Conclusion: The audit identified several aspects in the care of the terminally ill that could be improved. End‐stage pathways may provide a model for improving the care of patients dying in hospitals and institutions in Australia.     

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.     

Home hospice care.

Home hospice care, which helps patients with terminal illnesses remain at home, is becoming more common and accepted in the United States. The Medicare hospice benefit reimburses hospices for the care of elderly patients. The goal of hospices is to help the patient and family remain in control of the dying process as much as possible. Palliative care rather than the extension of life is emphasized. Hospice techniques for controlling symptoms such as pain, nausea, and vomiting are discussed in this article.     

Hospice Admission Practices: Where Does Hospice Fit in the Continuum of Care?

OBJECTIVES: To evaluate selected hospice admission practices that could represent barriers to hospice use and the association between these admission practices and organizational characteristics. DESIGN: From December 1999 to March 2000, hospices were surveyed about selected admission practices, and their responses were linked to the 1999 California Office of Statewide Health Planning and Development's Home and Hospice Care Survey that describes organizational characteristics of California hospices. SETTING: California statewide. PARTICIPANTS: One hundred of 149 (67%) operational licensed hospices. MEASUREMENTS: Whether hospices admit patients who lack a caregiver; would not forgo hospital admissions; or are receiving total parenteral nutrition (TPN), tube feedings, radiotherapy, chemotherapy, or transfusions. RESULTS: Sixty-three percent of hospices restricted admission on at least one criterion. A significant minority of hospices would not admit patients lacking a caregiver (26%). Patients unwilling to forgo hospitalization could not be admitted to 29% of hospices. Receipt of complex medical care, including TPN (38%), tube feedings (3%), transfusions (25%), radiotherapy (36%), and chemotherapy (48%), precluded admission. Larger program size was significantly associated with a lower likelihood of all admission practices except restricting the admission of patients receiving TPN or tube feedings. Hospice programs that were part of a hospice chain were less likely to restrict the admission of patients using TPN, radiotherapy, or chemotherapy than were freestanding programs. CONCLUSION: Patients who are receiving complex palliative treatments could face barriers to hospice enrollment. Policy makers should consider the clinical capacity of hospice providers in efforts to improve access to palliative care and more closely incorporate palliation with other healthcare services.     

Stigma, burden, social support, and willingness to care among caregivers of PLWHA in home-based care in South Africa

Despite its benefits for people living with HIV/AIDS (PLWHA), home-based care (HBC) may have negative effects on caregivers. Caregivers experience high levels of burden and may be targets of HIV-related prejudice and discrimination. In this cross-sectional survey of 358 caregivers from five hospices across KwaZulu-Natal, South Africa, 49 (13.7%) caregivers personally experienced discrimination as a result of caring for PLWHA. One hundred and seventy (47.5%) marked one or more items on the HIV stigma scale. Eighty-eight percent had low to moderate levels of caregiver burden. People with higher level of burden and higher income were more likely to hold stigmatizing beliefs. Caregivers with the following characteristics: support from a nurse, support from community careworker, HIV stigmatizing beliefs, and personal experience of discrimination as result of caring for PLWHA and low caregiver burden, had more than twice the odds of wanting to care for another PLWA in the future. Overall, caregivers in HBC experience low level of severe caregiver burden. The support offered to caregivers from the hospice and relatively low levels of discrimination encourage expansion of HBC programs for PLWHA.     

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.     

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.     

Hospice: a place for healing and dying well

Caregivers of people with end-stage AIDS face difficult challenges in working with the young, disabled, and dying as they try to help these individuals learn to live and die well. A hospice, a place where people come to die, is based on the philosophy that death can be experienced as a meaningful stage of life. The role of the hospice counselor is to assist dying clients in moving toward inner peace and self-possession, the ultimate goal of dying well. Counselors and caregivers of people with AIDS find their clients dealing with denial, anger, and depression. In the residential hospice setting, staff daily face the need to respond to these issues and the dynamic nature of HIV disease in a community made up of residents, families, partners, volunteers, and other staff. The goal of a hospice is to establish an environment that allows growth, communication, and achievement, despite physical and emotional decline. Hospice care enables individuals to experience the full spectrum of life with all of its emotions while facing the reality of death.     

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.     

Hospice Care in Nursing Homes: Is Site of Care Associated with Visit Volume?

OBJECTIVES: To determine factors associated with hospice visit volume and to examine whether visit volume differs by nursing home (NH) versus non-NH setting. DESIGN: Retrospective cohort study. SETTING: Twenty-one hospices across seven states under the ownership of one parent provider. PARTICIPANTS: Hospice patients from October 1998 through September 1999 in NH (n=9,460) and non-NH (n=15,484) settings. MEASUREMENTS: Data were from the provider's centralized information system. Average daily visit volume was the number of visits divided by the number of hospice routine home care days (days not in hospice inpatient or continuous home care). Multivariate logistic regression tested the association between site of care and an individual's probability of having average daily visits above the sample median. RESULTS: Average daily visits+/-standard deviation were 1.1+/-1.1 for NH and 1.2+/-1.3 for non-NH hospice patients. Site of care was not significantly associated with having an average daily visit volume above the sample median, but patients in NH settings had a lower probability of having a nurse average daily visit volume above the median (adjusted odds ratio (AOR)=0.59, 95% confidence interval (CI)=0.46-0.74) and a greater probability of having social worker (AOR=2.46, 95% CI=1.87-3.24), aide (AOR=1.97; 95% CI=1.11-3.48), and clergy (AOR=3.23, 95% CI=2.21-4.44) average daily visits above the median than those in non-NH settings. CONCLUSION: A different mix, not volume, of services appears to be used to address the physical, psychosocial, and spiritual needs of hospice patients/families who reside in NH settings than of those in non-NH settings.     

Calls for Reform to the U.S. Hospice System

The purpose of this paper is to provide a historical perspective of the hospice system within the U.S. In addition, this paper discusses current trends within the U.S. hospice system and provides a platform for discussion about the future of the system in terms of policy standards. The more than 30?year history of hospice in the U.S. has experienced many changes. Originally organized as nonprofit entities, hospices became Medicare funded in the 1980??s and has seen substantial growth in the number of for-profit entities. Hospice has moved from being seen as a ??place to go die?? to being viewed as a viable option for long-term care near the end of life. Changes in the hospice payment system from a per diem reimbursement system and calls for quality measures are at the forefront of the current system and the major issues that the system faces in the future.     

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).     

Ethical issues in the chronically critically ill patient

The chronically critically ill are a challenging population of patients. Their mortality rate is high and expected functional status is low. The physician responsible for the care of these patients often is conflicted because the gains experienced by these patients may be small or absent whereas the pressure by society to use medical resources better is great. This pressure leads to the need for making difficult decisions on issues ranging from the initiation of acute care to withholding and withdrawing of care at the end of life. By understanding the ethical principles that govern decision-making, the physician can guide patients and their families toward realistic expectations.     

Managed care demands flexibility, creativity

The definition of hospice care is changing as home care providers come under managed care regulations. Hospice care for AIDS patients is demanding, requiring extra time from home care providers. The managed care cost-cutting measures require creativitity and patience. The Visiting Nurses and Hospice of San Francisco (VNH) has held seminars to help providers adapt to managed care.