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Hospice: Philosophy of care and appropriate utilization in the United States

Hospice: Philosophy of care and appropriate utilization in the United States
Authors:
Diane E Meier, MD, FACP
Elizabeth McCormick, MD
Ruth L Lagman, MD, MPH, FACP, FAAHPM
Section Editor:
Robert M Arnold, MD
Deputy Editor:
Jane Givens, MD
Literature review current through: Apr 2021. | This topic last updated: Dec 07, 2020.

INTRODUCTION — Hospice care is a model and philosophy of care that focuses on providing palliative care to patients with life-limiting illness, focusing on palliating patients’ pain and other symptoms, attending to their and their family/loved one’s emotional and spiritual needs, and providing support for their caregivers.

The concept of hospice started during the middle ages when hospices were set up as places of rest for pilgrims and other travelers. At the end of the 19th century, hospices were designated specifically to care for the dying, first in Ireland and later in England. St. Christopher’s Hospice in London opened in 1967 under the direction of Dr. Cicely Saunders. A nurse, social worker, and a physician, Saunders developed and advanced the modern hospice movement to reflect her commitment to patient-centered care, pain management, research, and education. The philosophy and practice of the St. Christopher’s Hospice program has since spread to many countries around the world.

Hospice services are designed to provide comprehensive interdisciplinary team-based palliative care for patients with serious medical illness and a prognosis of six months or less if the disease follows its natural course. Hospice services in the United States are an insurance benefit reimbursed by Medicare, Medicaid, and other payers.

In the United States, hospice was initially a grass roots and volunteer response to bring attention to the needs of the dying, with the goal of providing patient-centered care and avoiding unnecessary medical intervention. In 1982, the Medicare hospice benefit was authorized under part A of the Medicare program [1].

The past two decades have seen a dramatic increase in the number of hospice programs internationally and within the United States. For example, in the United States [2-4]:

As of 2018, there were 4639 hospice programs serving an estimated 1.55 million Americans yearly [5].

In 2018, 50.7 percent of Medicare decedents utilized hospice at some point in their care, an increase from 22 percent in 2000 [5].

Approximately 50 percent of all deaths in 2018 were under the care of a hospice program; this compares favorably with 41.9 percent of all deaths in the United States in 2010 and is a marked improvement from 1992, when only 1 of every 12 deaths of Medicare beneficiaries was under the care of a hospice program [5].

Hospice programs are located in all 50 states, as well as the District of Columbia, Puerto Rico, Guam, and the United States Virgin Islands, further illustrating the growth of hospice care nationwide. Hospices range widely in size, with 34.5 percent caring for fewer than 50 patients yearly, 18.5 percent caring for 101 to 200 patients yearly, and 12.5 percent caring for greater than 500 patients yearly [5]. Hospice programs also differ in tax status category. In 2018, the majority of hospice programs were for-profit agencies (70 percent), with not-for-profit hospices now making up 27 percent of programs and government-owned programs making up 3.4 percent [5]. The number of for-profit hospice providers has grown rapidly since 2014.

In tandem with the growth of the hospice movement and aging of the population, the patterns of diagnosis among patients receiving hospice care have changed. For example, in the United States, death from cancer accounted for 53 percent of hospice patients in the 1990s, whereas in 2018, only 29.6 percent of hospice patients had cancer and most died from the combination of other chronic debilitating diseases (such as heart and circulatory disease, dementia, lung disease, and stroke) [5,6]. These shifts in diagnoses reflect the correlation of hospice utilization with changes in the leading causes of death (cancer accounted for approximately 22 percent of deaths in the United States in 2016 [7]).

Despite the rapid growth of hospice care in the United States and elsewhere, significant gaps remain in the delivery of services for patients with serious medical illnesses who are not dying but are living with one or more chronic illnesses and therefore may not meet the hospice eligibility criteria. For example, the Institute of Medicine in the United States released a report on care near the end of life in which they acknowledged that as the number of Americans surviving with chronic disease and cancer increases, the need for patient-centered care based on patient need and not solely on prognosis has never been more relevant. Unfortunately, the fragmented United States health care system, the dominance of fee-for-service payment incentives, and the shortage of palliative care trained professionals contribute to the gaps in access to care for those with serious, complex, and debilitating illness who may not be hospice-eligible [8,9]. (See 'Eligibility' below.)

This topic will discuss the hospice model of care and utilization of hospice programs and will draw specifically on the experience in the United States. An overview of palliative care services in the United States and a separate discussion of palliative care from an international perspective are presented separately. (See "Benefits, services, and models of subspecialty palliative care" and "Palliative care and hospice outside of the United States".)

THE HOSPICE MODEL OF CARE — Hospice care provides medical care and support to a patient with a limited prognosis from a serious medical illness and their family/loved ones with a focus on quality of life rather than life prolongation or cure. The hospice philosophy embraces the general principle of a comfortable death with dignity. The care and treatment provided are based on the patient and family/loved one’s goals and values.

The key concept of hospice identifies that suffering in the dying patient derives from a combination of symptoms and impairments that disrupt physical, psychological, spiritual, and social equilibrium, which Cecily Saunders referred to as “total pain” [10]. The hospice model is one of interdisciplinary team care that provides comprehensive care addressing all aspects of suffering [11]. Patients facing unrelieved suffering experience demoralization and existential angst (questioning the meaning of life, loss of freedom, loss of identity and dignity, grief, and fear of dying); these consequences of suffering must be addressed in the context of care provided by the hospice interdisciplinary team [12].

The interdisciplinary hospice team is available to provide services, either directly or by phone, seven days per week and 24 hours per day. Hospice care is most often provided in the patient’s place of residence (private home, nursing home, or residential living facility) but can also be provided in a dedicated facility such as a hospice inpatient facility [3,6,9]. In the 2018 data from the National Hospice and Palliative Care Organization (NHPCO), only 7 percent of hospice patients died in an acute care hospital, where admissions are avoided if at all possible [5]. (See 'The hospice interdisciplinary team' below.)

Distinction between hospice and palliative care — The specialty of palliative medicine arose as a direct result of the hospice movement. Palliative medicine incorporates the interdisciplinary and holistic care developed by hospice, focusing on symptom management, supporting and assisting with communication, and providing such care to a wider group of patients including those who are not dying or who cannot receive or choose not to receive hospice services. While all care that is delivered by hospices can be considered palliative care, not all palliative care is delivered by hospices [13].

Palliative care aims to relieve suffering in all stages of disease, whether the disease is curable, chronic, or progressive, and is not limited to end-of-life care. Within an integrated model of medical care, palliative care is provided at the same time as curative or life-prolonging disease treatments [9,14]. By contrast, hospice is palliative care specifically offered to patients at the end of life when curative or life-prolonging therapy is no longer beneficial or when its burdens outweigh its benefits.

The hospice interdisciplinary team — Hospice is provided by specially trained clinicians and support staff whose goals are to ensure that patients and their families/loved ones are cared for during what can be a very difficult time. This interdisciplinary team can include any of the following:

Registered Hospice nurse – The registered nurse is the primary case manager and is responsible for skilled nursing care and coordination of other members of the interdisciplinary team. Hospice nurses, who are ideally certified (eg, in hospice and palliative care in the United States), visit patients regularly, from daily to weekly based on need.

Hospice physician – The hospice physician plays both a medical and administrative role and is ideally board-certified in the specialty of Hospice and Palliative Medicine. Some hospice physicians visit patients at home, particularly if the patient does not have an involved attending physician. In addition, the hospice physician acts as a liaison to the attending clinicians and assists with symptom management.

Primary attending physician – Although the primary attending (and often the referring) physician is encouraged to remain involved in the care of their patients after referral to hospice, unfortunately for the continuity of the doctor-patient relationship, this does not often occur. In these cases, the hospice physician acts as the primary physician for the patient. Ideally, the primary attending physician works directly with the hospice nurse and also in collaboration with the hospice medical director to monitor symptoms and order interventions such as medications or skilled nursing care. Physicians not employed by the hospice may bill fee for service for their care of their patients within the hospice program [15].

Social worker – The social worker provides psychosocial (eg, housing, nutrition, transportation, and family caregiver support) support for patients and families/loved ones, including counseling, bereavement support, burial/funeral planning, and/or referrals to other support systems. (See "Psychosocial issues in advanced illness".)

Chaplain – The chaplain oversees the spiritual needs of patients and families/loved ones. Spiritual care is offered to patients with both formal and unstructured religious beliefs. For patients with a formal religious background, chaplains can act as liaisons to their clergy or other religious figures. (See "Overview of spirituality in palliative care".)

Home health aides – Home health aides and other direct care workers provide crucial assistance to the patient and caregivers in the home, including personal care, food preparation, and shopping. Hospice care includes coverage for direct care workers, although in practice their hours are typically limited to a few hours per week, resulting in heavy reliance on family members or other caregivers for the bulk of the needed hands-on care.

Bereavement counselors – Bereavement counselors are available to provide support to bereaved loved ones of hospice patients for the 13 months after a patient’s death.

Community volunteers – Volunteers are a mandatory component of hospice care and receive training and support for their work. They provide extra support for patients and families/loved ones, such as reading to patients, visiting, and assisting with errands.

Who is a candidate for hospice? — Hospice is appropriate (1) when patients are entering the last weeks to months of life and (2) patients and their families or other decision-makers decide to forego disease-modifying therapies with curative/life-prolonging intent in order to focus on maximizing comfort and quality of life. This may occur when either:

Disease-modifying treatments are no longer deemed beneficial

The burdens of disease-modifying treatments outweigh their benefits

Clinicians should err on the side of making a hospice referral, especially for patients who have been chronically ill and exhibit any of the following:

A decreased functional status, spending more than one-half their time in bed or chair

Poor quality of life

Physical and psychological distress

Family or other informal caregiver burden and heightened stress

Increasing frequency of medical and symptom crises

Multiple hospitalizations and emergency department visits

Referral is especially important if the patient’s disease is causing progressive decline; if the patient’s disease is associated with recurrent crises requiring 911 calls, emergency department visits, and/or hospitalization; and if the patient’s highest priority is remaining in control, at home, with support for maintaining an acceptable quality of life. Unfortunately, hospice referral is often late in the disease course. For example, among a cohort of 358 oncology patients discharged from hospital to subacute rehabilitation, 21 percent died within one month, of whom only 31 percent used hospice [16]. Despite the availability of a six-month benefit period, median length of stay is persistently short in hospice care and ranges from eight days for people with chronic kidney disease, to 18 days for people with cancer, to 55 days for dementia [5].

A variety of tools have been developed to help clinicians in prognostic assessment. Additionally, two systematic reviews provide guidance for identifying patients with end-stage illness [17,18]. The systematic reviews have identified patient presentations associated with a median survival of six months or less for patients with cancer [18] and non-cancer illnesses (heart disease, pulmonary disease, dementia, geriatric “failure to thrive” [frailty], liver disease, stroke or coma, neurologic disease, HIV/AIDS, and end-stage kidney failure) [17]. These patient characteristics may identify individuals in whom disease-modifying treatment is unlikely to prolong survival and for whom discussion of hospice services may be appropriate. The website ePrognosis provides an easy-to-use algorithm based on patient location, functional dependency, and level of consciousness to estimate survival.

However, clinicians should not rely solely on these prognostic tools, particularly for patients with conditions other than cancer, because they may have limited accuracy in these cases. In cancer, functional status is typically a reliable predictor of prognosis; as cancer patients spend more and more time in bed and chair, prognosis can be measured in months. This is not true of many other chronic debilitating illnesses, such as dementia, chronic obstructive pulmonary disease (COPD), end-stage kidney disease, and heart failure, where functional dependency may persist for many years prior to death. Therefore, clinical judgment remains a vital tool in determining when a patient is ready for hospice. (See "Communication of prognosis in palliative care", section on 'The science of estimating prognosis'.)

In the United States, guidelines from Medicare are available to help in the determination of terminal status for hospice qualification. A table indicates criteria to determine if a patient meets the indications for an estimate of six-month life expectancy using a decline in clinical status generally by non-disease specific baseline guidelines (table 1) that are used in conjunction with disease-specific guidelines (table 2). However, individual prognostication remains difficult even with such guidelines, particularly for non-cancer diagnoses such as dementia and heart, lung, kidney, and liver failure, where the disease trajectory is more erratic than with advanced cancer and death is difficult to predict [19]. (See 'Eligibility' below and "Palliative care for adults with nonmalignant chronic lung disease", section on 'Clinical course and causes of death' and "Palliative care for patients with end-stage liver disease", section on 'Disease trajectory and estimating prognosis' and "Communication of prognosis in palliative care", section on 'The science of estimating prognosis' and "Palliative care for patients with advanced heart failure: Indications and systems of care", section on 'Estimating prognosis'.)

If patients outlive their estimated six-month prognosis while on hospice, the benefit can be renewed indefinitely as long as there is clinical evidence of continued decline consistent with progression of disease. A significant number of patients stabilize once referred to hospice as they are supported to recover from the stresses of hospitalization and the complications of disease treatments. If this stabilization/improvement lasts longer than six months, the patient may have to be discharged from the hospice program because they no longer meet the prognostic criterion. (See 'Discharge' below.)

Given the benefits of hospice care support in the home and the reality of prognostic uncertainty, especially in non-cancer chronic debilitating illness such as dementia or organ failure, erring on the side of referral to a hospice program allows hospice staff to utilize their expertise to assess eligibility and suggest other supportive care resources if the patient is not yet deemed eligible for hospice.

Specific Medicare eligibility requirements for hospice are discussed below. (See 'Eligibility' below.)

Common questions and misperceptions about hospice — Patients, families/loved ones, and clinicians may have misunderstandings about hospice care. The following common questions frequently arise in discussions of hospice eligibility:

Is hospice a place? No. Hospice is a model of care, not a physical location, and hospice care can be provided in the patient’s home, in a nursing home or assisted living facility, or in the hospital.

What type of treatments can patients receive while being cared for by a hospice program? Hospice services include treatments and interventions that achieve the goal of maximizing comfort and quality of life. In some cases, and depending upon the cost of the treatments (hospices must pay for all treatments related to the terminal illness), some patients may continue to receive the same treatments they received prior to hospice referral, such as palliative chemotherapy, radiation, and heart failure treatments. The hospice medical director reviews all treatments and decides if their continuation is aligned with maintaining comfort and quality of life.

Can a patient leave a hospice program? Patients can come and go from hospice at any time if it is not meeting needs or if a new disease treatment becomes available that is not able to be covered by hospice. Once patients leave hospice, they may return to the program at any time that hospice services fit their care needs, as long as they continue to meet the eligibility criteria (including a prognosis of under six months).

Do patients have to be actively dying to receive hospice services? No. Patients do not have to be actively dying to receive hospice care. Patients must show a functional decline and have an estimated prognosis of six months or less to receive hospice services.

Do patients have to be DNR to receive hospice? In the United States, patients are not legally required to be categorized as “do not resuscitate” (DNR) to receive hospice care. However, hospices should help patients understand that enrollment in hospice is a choice to accept that death is likely in the next months and that life-sustaining technologies, such as ventilator therapy, intensive care management, and vasopressors, will neither change the underlying progression of disease nor reduce suffering and are therefore not recommended and not typically used while in hospice care.

What happens if a patient is still alive after six months? Roughly 21 percent [5] of hospice beneficiaries “fail to die on time” and live longer than the six-month prognostic limit. Most of these beneficiaries have non-cancer chronic debilitating illnesses like dementia and frailty. When this occurs, the hospice staff are required either to discharge the patient from hospice or justify continued hospice eligibility through demonstration of continued decline that confirms a high likelihood of death within six months if the disease follows its usual course through the recertification process. Among patients discharged from hospice, a high percentage are hospitalized and/or die soon thereafter [20]. (See 'Discharge' below.)

Does hospice care hasten death? Some patients fear that entering hospice care hastens death or shortens life. This is a misconception and is not based on prospective studies. In fact, some studies suggest a survival advantage (possibly attributable to avoiding the hazards of hospitalization) among hospice beneficiaries as compared with comparably ill patients who do not receive hospice care. (See 'Benefits' below.)

Will I have to give up my primary care doctor? Some patients fear abandonment by their primary physician if they enroll in hospice care. This is not a misconception, as, unfortunately, most physicians do not continue to follow their patients after referral to hospice. However, the primary attending physician can and should continue to play a key role in continuing to care for the patient while on hospice. The long-term, trusting relationship between a patient and their doctor is a key element of quality of care and the ethical principle of non-abandonment. If physicians are uncertain about how to stay involved in their patient’s care (and continue to bill) after a hospice referral, information is available from the hospice’s medical director or can be found through online billing information resources.

Services — Hospice cares for and supports the patient and family or other informal caregivers during the illness and provides bereavement services to family members and other loved ones for up to 13 months after the death of the patient. The types of services depend on the individual situation but may include any or all of the following discussed below.

Symptom control — A key component to effective hospice care is symptom control in advanced illness. Patients near the end of life experience a variety of symptoms, which may include pain, dyspnea, nausea/vomiting, anorexia, fatigue, agitation, anxiety, and depression. (See "Overview of managing common non-pain symptoms in palliative care" and "Assessment and management of depression in palliative care" and "Approach to symptom assessment in palliative care".)

Effective symptom assessment and control requires close collaboration between the nurse case manager and the attending physician. Ideally, to increase the timeliness of care, the attending physician should feel comfortable in extending the ability to adjust medications, within certain parameters, to the nurse case manager. Most hospices use standing orders to facilitate this approach. The attending physician signs approval at the time that the patient is admitted to hospice. As an example, titration of analgesics or other drugs may be specified within predetermined parameters, which can then be adjusted by the nurse without having to constantly refer back to the attending physician for new orders.

In order to be prepared to handle the possible sudden onset of new symptoms in a patient, hospice provides all patients with a comfort kit at admission to be kept in the patient’s home refrigerator. The comfort kit contains medications for pain, dyspnea, agitation, nausea, and constipation in formulations that can be administered by family members or other informal caregivers in the home. The hospice nurse and medical director provide families/loved ones and caregivers with clear written guidance on how and when to administer these medications. Access to medications to control symptoms in the home allows patients on hospice to avert symptom crises, thus avoiding the hospital and emergency department when possible.

Psychosocial and spiritual care — Psychosocial and spiritual care is of great importance in patients with advanced incurable disease. A humanistic approach, sensitivity to cultural issues, and openness to differing religious and spiritual beliefs are all important. An important principle is to extend similar respect and consideration to the patient’s family or other caregivers who carry a considerable burden during this time. Support of the family and other informal caregivers is central to good hospice care. (See "Overview of spirituality in palliative care" and "Psychosocial issues in advanced illness".)

Nursing — The hospice nurse works with the patient, family or other loved ones, and interdisciplinary team to develop a plan of care to assess symptoms and care needs. The primary responsibility for day-to-day care 24 hours per day, seven days per week typically falls on one or more family members or other informal caregivers, which may include friends as well as privately paid caregivers. The hospice team visits when necessary and once a week on average to provide support and education. Delivery of hospice care necessitates effective education and ongoing support of the family and other informal caregivers given the limited time the hospice aides or nurses are able to spend in the home. Family or other informal caregivers who report emotional strain [21] have a significantly increased risk of serious illness and death, and support from the hospice team is essential to reducing this burden and stress.

Short-term intensified services — On occasion, the patient care needs can increase. For example, a patient may require more care due to extensive wound care requirements, poorly controlled symptoms, complicated psychosocial issues, family/loved one exhaustion, or need for extra support during the active phase of dying.

In order to address these needs, hospice may provide for additional levels of nursing care for short periods. This may include:

Admission to a general inpatient hospice service in a variety of settings, including a hospice facility, hospital, or skilled nursing facility. This short-term care is available to address acute pain and other symptoms that cannot be managed in the home and is typically appropriate for patient care that requires skilled nursing.

24-hour support or continuous care services, usually from a licensed practical nurse, in the home for management of acute symptoms and to reduce family or other informal caregiver burden to facilitate keeping the patient at home.

Temporary respite care in a local nursing home or inpatient hospice facility to give the caregiver a rest from caregiving responsibilities.

Bereavement care — Bereavement care of the family/loved ones and other informal caregivers is a central component of hospice care. Grief and bereavement are associated with significant morbidity and mortality. Under the Medicare Hospice Benefit, bereavement support must be provided for 13 months after the patient’s death. The precise nature of bereavement services varies. In most cases, there is a process to identify persons at high risk of complicated bereavement (eg, unexpected, sudden deaths, multiple deaths in a family in a short space of time, or family or informal caregivers with poor social support systems). (See "Grief and bereavement in adults: Management".)

THE UNITED STATES MEDICARE HOSPICE BENEFIT — In the United States, home hospice care for patients over 65 years of age, or for those under 65 who are eligible for Medicare because of long-term disability, is covered through Medicare. Established as a permanent benefit in 1986, the Medicare hospice benefit model is also used by many private insurers and health maintenance organizations (HMOs) for their hospice programs. Most states also cover hospice for their Medicaid beneficiaries.

Eligibility — There are four criteria for enrollment in the Medicare hospice benefit:

Eligibility for Medicare part A, which is the benefit that covers hospice in addition to other care services (ie, inpatient hospitalization, skilled nursing facility care, nursing home care, and home health services). Individuals qualifying for Medicare part A include:

United States citizens or legal residents who are eligible for social security or railroad retirement benefits.

Age over 65, or under 65 years and eligible for Medicare because of a long-term disability for >2 years and/or with end-stage kidney disease.

Referral to a hospice that is Medicare-certified. In the United States, most hospice agencies (93 percent) have been certified by the Centers for Medicare and Medicaid Services (CMS) to provide services under the Medicare hospice benefit [6].

A statement signed by the patient indicating that they are choosing hospice care instead of regular Medicare for their hospice diagnosis. Of note, Medicare regulations allow for regular Medicare reimbursement for incidental medical expenses that are unrelated to the terminal illness (eg, acute myocardial infarction in a patient with advanced cancer). The determination of “relatedness” is complex and is the responsibility of the hospice medical director.

Certification by both the patient’s personal physician and the hospice medical director that the patient has a terminal illness and is likely to have less than six months to live if the disease follows its usual course. In addition, the patient’s treatment priorities should emphasize alleviating symptoms of illness and focusing on comfort and quality of life rather than “cure” or disease-modifying treatment of the underlying terminal condition. (See 'Limitations' below.)

Guidelines from Medicare are available to help in the determination of terminal status for hospice qualification. Of note, hospices may not report debility, failure to thrive, or dementia codes classified as “unspecified” as principal hospice diagnoses on the hospice claim [22]. The justification for this decision was that these diagnoses (while near-universal among frail older adults with multimorbidity) have indeterminate prognoses and are therefore not “terminal” illnesses. (See "Frailty" and "Failure to thrive in older adults: Evaluation".)

A table illustrates criteria to determine if a specific patient meets the estimated six-month life expectancy based upon either a decline in clinical status generally or other non-disease-specific criteria (table 1). It is important to point out that determination of decline presumes an assessment of patients over time; therefore, it is important that evaluation for hospice services include both report of baseline status, current status, and changes that have occurred over time. For hospice eligibility, the non-disease-specific baseline guidelines must be used in conjunction with disease-specific guidelines (table 2). Individual prognostication remains difficult even with such guidelines, a major contributor to the prevalence of late hospice referral in the United States.

Structure — The Medicare hospice benefit will pay for a comprehensive array of services related to the terminal condition. Medicare-certified hospice programs provide home-based care including:

Skilled nursing care, such as symptom assessment and monitoring, wound care, and education of family members or other informal caregivers.

Medical equipment and supplies.

Medications related to the terminal condition.

Psychosocial care, particularly by social workers and chaplains.

Limited hours of home health aide or attendant care in the home (usually no more than three hours/day, four times per week).

Bereavement support for family and other informal caregivers.

Short-term respite care is available for up to five days every 30 days, and in some cases more frequently. Hospices vary in the amount and frequency of respite care provided.

Short-term inpatient care for difficult to control symptoms.

The Medicare hospice benefit is divided into a number of certification periods. The patient is first eligible for two 90-day periods. These are followed by unlimited periods of 60 days each. For each initially 90-day certification period, the attending physician must recertify that the patient is terminally ill. In theory, a patient who continues to show decline can continue to be eligible for hospice care even if they have survived longer than the specified six-month period; approximately 21 percent of hospice patients fall into this category of more than six-month survival [5]. As of January 1, 2011, Medicare has mandated a face-to-face, non-billable visit by a physician or nurse practitioner for patients surviving into the third benefit period (six months, if the patient is continuously enrolled), once every 60 days.

For some patients, home hospice care is not feasible, and inpatient residential hospice facilities may be considered. The Medicare hospice benefit and most private insurers (see below) do not cover the cost of room and board at these facilities. These expenses can be significant, often more than USD $150 to $250 per day. In some states, Medicaid will cover these costs. Acute inpatient hospice facilities are available for short periods (usually under a week) either for complex symptom management that cannot be adequately addressed at home, or during the active dying phase, and is included in and covered by the Medicare Hospice Benefit.

Discharge — Patients may be discharged from hospice services if their medical condition stabilizes and they no longer show signs of decline. In these cases, hospice assists with transition of patient care to another provider and these patients may be referred again to hospice services when they again show signs of decline consistent with hospice eligibility. In addition, patients and/or their families or other decision-makers may choose to discontinue hospice at any time (sometimes referred to as a live discharge). In one study that included 139 patients who had been discharged from 1 of 18 hospices, the reasons for discharge were [23]:

Stabilization of their index medical condition (79 percent)

Patient or family decision (12 percent)

Pursuit of more disease-modifying treatment (7 percent)

In a separate study, the overall incidence and the outcomes of patients who were discharged from hospice were evaluated using national United States Medicare claims data for the 2010 calendar year [24]. Among the main findings were that:

The incidence of live discharges was 18.2 percent (182,172 discharges out of 1,003,958 cases).

The majority of patients discharged (76 percent) were admitted to a hospital within 30 days. In addition, 39 percent of these patients were readmitted to hospice in the next 180 days.

The survival rate at six months among those discharged from hospice was 50.6 percent.

Compared with White patients, Black and Hispanic patients were more likely to be discharged alive regardless of the hospice length of stay. In addition, Black patients (adjusted odds ratio [OR] 2.50, 95% CI 2.28-2.73) and Hispanic patients (adjusted OR 1.95, 95% CI 1.66-2.28) were more likely to be discharged from hospice, admitted to a hospital, and re-admitted to hospice.

Other risk factors for live discharges besides race and ethnicity include a terminal diagnosis of dementia or related disorder, service from a for-profit hospice, and care delivered in rural areas. Live hospice discharges are also more frequent among people with a terminal diagnosis of dementia [25], as well as among people served by for-profit hospices as compared with non-profit hospices, and among those cared for in rural regions [26].

ADAPTATIONS FOR COVID-19 — The coronavirus disease 2019 (COVID-19) pandemic has created challenges to the delivery of hospice care, and certain adaptations have been developed.

Telehealth service utilization — Telehealth hospice care delivery was initially piloted in 1998 to address the challenges of provider availability, geographical constraints, and weather-related realities in rural areas [27,28]. Initially not widely utilized, the pilot program was relaunched in 2017 with improved state-of-the-art technology and is now used to augment service delivery and reduce costs [29].

With the onset of the COVID-19 pandemic, the Centers for Medicare and Medicaid Services (CMS) released COVID-19 Emergency Declaration Blanket Waivers for Health Care Providers [30], allowing patients to access telehealth services at home. Health care providers can submit reimbursement for the care they provide using telehealth across the United States as of March 6, 2020 [31]. While hospice provider visits and services are covered as part of the hospice benefit and not billed separately, this waiver is useful to those primary care providers and specialists who may be referring patients to hospice or following along in their care while in hospice. Telehealth visits are especially useful for patients with COVID-19 who are in isolation, and they may be needed to meet increased demands.

For hospice care, permitted billable clinician services include telephonic services (audio) only for the purpose of counseling and coordination of care using the evaluation and management (E&M) codes, with options for time spent. Telehealth visits (audio and visual) are billable for symptom management using standard home care E&M codes with an accompanying modifier 95 to denote a telehealth visit. In addition, face-to-face visits for certification and recertification for hospice care were previously required but are now waived and can be completed by a clinician or nurse practitioner using telehealth during this pandemic. However, these certification and re-certification telephone visits are not billable.

In addition, given the scarcity of hospice providers even before the pandemic, the use of telehealth hospice services has also been necessary to meet the needs of patients not suffering from COVID-19 during this time. Limitations in access to personal protective equipment (PPE) for both hospice and long-term care organizations have restricted access to hospice care. In addition, restrictions on visitors have significantly compromised the quality of care for people receiving hospice care, compounding physical and mental decline with loneliness [32].

Communication and bereavement — Alleviating suffering and providing optimal symptom management during the dying process for those with predictably terminal illnesses is the underlying goal of hospice care. Infection with COVID-19 has presented unique challenges due to the implementation of no-visitor policies in most health care facilities. Although some facilities (especially hospitals) may make exceptions to these policies for end-of-life care, many patients are dying alone without their families or loved ones at bedside [32]. Hospices have responded by utilizing telehealth visits and utilizing innovative technologies such as tablets and smart phones to allow families/loved ones to communicate with their loved ones. COVID-19 communication resources for palliative care providers caring for patients in isolation are presented elsewhere. (See "Palliative care: The last hours and days of life", section on 'COVID-19 communication resources'.)

Bereavement services are a key feature of hospice care and are routinely delivered to survivors for up to 13 months after death. The unique features of the COVID-19 pandemic, including the acuity of onset and progression, and the physical distancing from family or other loved ones that is required, may increase the risk of prolonged or complicated grief [33].

BENEFITS AND LIMITATIONS OF HOSPICE — The hospice philosophy embraces the general principle of a comfortable death with dignity. There are both advantages and limitations of the hospice approach.

Benefits — Dying at home with hospice care is associated with significantly better quality of life for patients and families/loved ones, reduced “aggressiveness” of treatment at the end of life, and markedly reduced risk of posttraumatic stress disorder and prolonged grief disorder among bereaved family members/loved ones as compared with outcomes among those dying in a hospital or intensive care unit [34,35].

Care provided in a hospice program offers patients and families/loved ones many benefits, including:

Comprehensive interdisciplinary care

24-hour phone access to on-call nurses and clinicians seven days per week

Reduction of out-of-pocket expenses for related medical costs, including medications and durable medical equipment

The National Hospice Study was the largest study to compare the dying experience with and without hospice. Initial results showed that patients’ quality of life was similar in both groups [36]; however, secondary analysis revealed an improved quality of death in patients receiving hospice care [37]. In a mortality follow-back survey, family members of patients who died in hospice were significantly more satisfied with the care than those of patients who died while receiving care in hospitals, nursing homes, or home health agencies [38]. Family survivors are less likely to experience posttraumatic stress disorder and prolonged grief disorder after hospice care as compared with those whose loved ones died in a hospital or intensive care unit [34].

Increasing evidence also suggests that hospice is associated with decreased direct (billed services) costs in the home setting, particularly for patients with cancer [35,39,40].

By contrast, data on the consequences of increased access to, and length of stay in, hospice among nursing home residents suggest that despite reduced hospital utilization, total Medicare spending is actually higher for hospice beneficiaries in nursing homes, by an average of around USD $6000 per person [41]. Changes to the hospice reimbursement rate beginning in 2016 (with higher rates early and late in the stay and lower rates in the middle of the stay) are intended to address this issue. (See "Palliative care: Nursing home", section on 'Initiatives to improve palliative care in long-term care settings'.)

Finally, utilization of hospice increases the likelihood that an individual will die at home:

Data from the National Hospice and Palliative Care Organization (NHPCO) suggest that 80 percent of Americans prefer to die at home but that only approximately 25 percent do [22]. However, among the patients who died with hospice involved in their care, 81 percent died either at home or in their long-term care facility [5].

The greater likelihood of dying at home for patients who used a home-based end-of-life care program as compared with usual care was confirmed in a Cochrane review of four trials (risk ratio 1.33, 95% CI 1.14-1.55) [42].

Limitations — The primary limitation of hospice is restriction of insurance coverage for life-prolonging treatments (including hemodialysis and peritoneal dialysis if the terminal illness is end-stage kidney disease, and specific anticancer and palliative cancer treatments if the terminal illness is cancer). Under the Medicare Hospice Benefit, Medicare provides a fixed sum of money, paid on a per diem basis, from which all provided medical care must be paid. The following difficulties result:

Medical expenses for imaging or laboratory studies and costly treatments such as transfusions, radiation therapy, dialysis, or high-priced symptom medications, which the attending physician feels are indicated to provide optimal palliation of the terminal illness, become the financial responsibility of the hospice under the per diem rate. Larger hospices serving at least 100 persons per day typically have the economies of scale necessary to cover some of these costs, but smaller hospices may be unable or unwilling to absorb them. On October 1, 2013, the Secretary for Health and Human Services, directed by the Patient Protection and Affordable Care Act, revised the hospice payment methodology [43], authorizing Centers for Medicare and Medicaid Services (CMS) under section 3140 of the Affordable Care Act to conduct a three-year concurrent care demonstration program at up to 15 rural and urban locations to compare cost, access, and quality of hospice concurrent care with current Medicare services for patients with terminal illnesses (the Medicare Care Choices Model [MCCM]) [44].

In 2016, CMS initiated the MCCM, designed to test allowing hospices to provide disease-specific treatments intended to prolong life for terminal conditions, in return for a per-member, per-month payment significantly lower than the usual hospice per diem rate [45]. However, it is not clear that this model has had its intended effect. For example, in a case series study of United States hospice expense reports from 2011 to 2018, the percentage of hospices that incurred radiotherapy expenses decreased from 12.8 to 5.4 percent over the timeframe [46]. The decrease was seen in both for-profit (8.8 to 2.9 percent) and non-profit hospices (25.5 to 18.2 percent). As radiotherapy treatments are often palliative (eg, for pain control of bony metastases), this trend raises concern that the Medicare Care Choices Program payment levels are not adequate to allow hospices to provide appropriate disease-specific or palliative (eg, radiation therapy) care treatments. Evaluation of the MCCM suggests that allowing access to curative care at the same time as hospice care reduces both symptom distress and the need for crisis hospitalizations and emergency department visits, leading to significant reductions in Medicare spending.

As of 2014, hospice patients whose medications are billed through the Medicare prescription drug benefit, called Medicare Part D, will need prior authorization.

Hospitalizations are usually avoided once a patient is enrolled in a hospice program. The hospice benefit allows admissions to the hospital for short-term treatment of symptoms that cannot be managed at home. Hospices vary in their use of this aspect of the continuum of hospice care.

Because of these issues, patients who may benefit from the comprehensive care that hospice provides but who can realistically benefit from continued and simultaneous life-prolonging treatments are not eligible for the Medicare Hospice Benefit. This is especially a problem in patients with illnesses that result in a prolonged period of severe disability, such as heart failure, chronic obstructive pulmonary disease (COPD), advanced dementia, or end-stage kidney disease, in whom hospice enrollment may be delayed because of a desire to continue disease-modifying therapies or because of prognostic uncertainty [47].

In part as a result of these issues, hospice is underutilized, with over one-third of patients utilizing hospice for less than one week, and the national hospice median length of stay in the United States is approximately 23 days [3]. In an analysis of Medicare fee-for-service decedents since the year 2000, the number of patients utilizing hospice services for three days or less in the United States was the same in 2015 as it was in 2005 (7.7 versus 7.5 percent), despite an overall increase in the number of patients with hospice services at the time of death during this same time period (50 versus 32 percent) [48]. Late referral to hospice is associated with lower family satisfaction and bereavement outcomes as well as a lower quality of perceived end of life care [49,50].

An ongoing Medicare demonstration project is testing the lifting of the limits on life-prolonging treatment in 141 hospice organizations across the country. However, adoption as national policy should not depend only on whether the change reduces overall health care costs. As with any other medical intervention, the key measure of effectiveness is how much it improves patients’ health and well-being.

Potential utilization of life-prolonging therapy among hospice enrollees can be illustrated by data on patients treated in a Veterans Affairs Medical Center (VAMC), because these patients are able to access both hospice care and standard medical treatments. An observational study of veterans diagnosed between 2006 and 2012 with stage IV non-small cell lung cancer compared the receipt of intensive treatments (two or more hospital admissions within 30 days, tube feeding, mechanical ventilation, intensive care unit admission) among patients in VAMCs with differing levels of hospice enrollment, which was used in the study as a proxy for patient exposure to palliative and hospice care [51]. Patients treated in VAMCs in the top hospice quintile (79 percent hospice users) were more than twice as likely to have concurrent cancer treatment after initiating hospice care than those in the lowest hospice quintile (55 percent hospice users). However, those treated in the top hospice quintile centers were less likely to receive intensive treatment in the six months after diagnosis (adjusted odds ratio [OR] 0.66, 95% CI 0.53-0.81) compared with those seen in the bottom hospice quintile centers. Although these data suggest that increasing the availability of hospice care without restricting treatment is associated with less intensive medical care, this study is observational in nature and so caution is needed in interpreting the results.

DISCUSSING HOSPICE WITH PATIENTS AND FAMILIES/LOVED ONES — Early discussions of hospice as a care option that also include an acknowledgement of the serious and life-limiting nature of the patient’s underlying disease can increase the likelihood of future hospice enrollment [52]. Unfortunately, there are barriers that may prevent the timely referral of patients to hospice. These include:

Eligibility requirements that patients must both have a prognosis of six months or less and sign away insurance coverage for disease-modifying (“curative”) treatment. (See 'Eligibility' above.)

A clinician’s comfort level in talking with patients and families/loved ones about limitations in prognosis and treatment options.

A table outlines useful language for discussing hospice services and recommending a hospice referral to patients and families/loved ones (table 3). This outline provides a step-based guide for discussions similar to that used to discuss serious news. (See "Discussing serious news".)

In general [53]:

The initial discussion should focus on clarifying the patient’s (and family or other loved one’s) understanding of their current medical situation and what to expect in the future; given the realities of their illness, what priorities now matter most to them; and, if appropriate, hospice services are then recommended as a way of achieving these goals. Often, discussions about the benefits and burdens of different treatment options require giving the patient and the family/loved ones enough time to consider the alternatives and involve repeated conversations over time.

This stepwise approach begins with establishing the medical facts and setting a time to meet with the patient and other decision makers.

After assessing the patient’s understanding of their illness and prognosis, defining priorities, concerns, and hopes for the future, and identifying patient and family/loved ones care needs, the provider should make a recommendation based on the patient’s goals and care needs.

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, “The Basics” and “Beyond the Basics.” The Basics patient education pieces are written in plain language, at the 5th to 6th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10th to 12th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on “patient info” and the keyword(s) of interest.)

Basics topics (see "Patient education: Medical care during advanced illness (The Basics)" and "Patient education: Advance directives (The Basics)")

SUMMARY

Hospice care provides medical care and support services to a patient with a terminal illness as well as to their family and other informal caregivers. The focus is on quality of life rather than cure or life prolongation. The hospice philosophy aims to help patients achieve comfort and quality of life until death; the care and treatment provided are based on the patient and family/loved ones goals and values. The hospice model is one of comprehensive interdisciplinary team care that addresses the physical, psychological, social, and spiritual aspects of suffering. Hospice care can be provided in people’s private homes, hospitals, nursing homes, assisted living facilities, and freestanding hospice inpatient facilities. (See 'The hospice model of care' above.)

Palliative care focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families/loved ones facing serious illness. Within an integrated model of medical care, palliative care can and should be provided at the same time as curative or life-prolonging care. Hospice is a specific model of palliative care that is offered to patients near the end of life when curative or life-prolonging therapy is no longer beneficial or effective. While all care that is delivered by hospices can be considered palliative care, not all palliative care is delivered through hospice programs. (See 'Distinction between hospice and palliative care' above.)

Hospice services become appropriate when patients and their families/loved ones decide to forego disease-modifying (“curative”) therapies in order to focus on maximizing comfort and quality of life, when curative treatments are no longer beneficial, when the burdens of these treatments outweigh their benefits, or when patients are entering the last weeks to months of life. For patients with a non-cancer terminal illness, it may be difficult to identify a population with a survival prognosis of six months or less. Clinicians should err on the side of making the referral for chronically ill patients with decreased functional status, frequent hospitalizations and/or emergency department visits, poor quality of life, physical and psychological distress, family or other informal caregiver burden, and stress under circumstances where the goals of care are comfort, being wherever the patient calls home, and staying in control. (See 'Who is a candidate for hospice?' above.)

Hospice provides high-quality end-of-life care, but it is often underutilized or initiated too late in a patient’s course.

While symptom control is one of the most important services provided by hospice, other services include nursing care and support at home, psychosocial and spiritual care, respite care, and bereavement care. (See 'Services' above.)

In the United States, home hospice care for patients over 65 years of age or for those eligible for Medicare because of either longer than two years of a disability or dialysis-dependent end-stage kidney disease is covered through Medicare (see 'The United States Medicare hospice benefit' above). Most other private insurers and Medicaid also cover hospice.

The advantages of hospice care include comprehensive interdisciplinary care, support to care for dying patients in the home (including 24-hour phone access to on-call nurses and clinicians seven days per week), and reduction of out-of-pocket expenses for related medical costs, including medications and durable medical equipment. Limitations include reliance on family, informal, or private-pay caregivers to attend to the daily personal care needs of patients and the lack of insurance coverage for some life-prolonging or expensive palliative treatments for the terminal illness, including specific anticancer treatments and radiation therapy, and dialysis. However, patients may leave and return to the hospice program at any time, as long as they continue to meet the eligibility criteria (including a prognosis of under six months). (See 'Benefits and limitations of hospice' above.)

Studies have shown that early discussions of hospice as a care option, which also include acknowledgment of the serious and eventually fatal nature of the patient’s underlying disease, can help prepare the patient and family/loved ones and increases the likelihood of future hospice enrollment. (See 'Discussing hospice with patients and families/loved ones' above.)

REFERENCES

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Topic 2200 Version 50.0

References

1 : National Hospice and Palliative Care Organization: History of Hospice Care http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285 (Accessed on March 17, 2011).

2 : MedPAC. Report to the Congress: Medicare Payment Policies (March 2010) 2010:148.

3 : National Hospice and Palliative Care Organizagion (NHPCO) Facts and Figures: Hospice Care in America. Alexandria, VA, Released September 2017. https://www.nhpco.org/sites/default/files/public/Statistics_Research/2016_Facts_Figures.pdf (Accessed on February 25, 2018).

4 : NHPCO Facts and Figures on Hospice. Released October 2017. https://www.nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-palliative-care (Accessed on March 13, 2018).

5 : National Hospice and Palliative Care Organization. NHPCO facts and figures: 2020 edition. Available at: https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2020-edition.pdf (Accessed on November 03, 2020).

6 : National Hospice and Palliative Care Organization. NHPCO facts and figures 2018 edition. https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf (Accessed on July 15, 2019).

7 : http://www.cdc.gov/nchs/fastats/leading-causes-of-death.htm (Accessed on May 06, 2019).

8 : Dying in America Improving Quality and Honoring Individual Preferences Near the End of Life, Institute of Medicine, 2014.

9 : A National Strategy For Palliative Care.

10 : A National Strategy For Palliative Care.

11 : Services, costs and appropriate outcomes in end of life care.

12 : The relief of existential suffering.

13 : The relief of existential suffering.

14 : Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy".

15 : Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy".

16 : Has There Been a Shift in Use of Subacute Rehabilitation Instead of Hospice Referral Since Immunotherapy Has Become Available?

17 : Systematic review of noncancer presentations with a median survival of 6 months or less.

18 : Systematic review of cancer presentations with a median survival of six months or less.

19 : Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

20 : Impact of hospice disenrollment on health care use and medicare expenditures for patients with cancer.

21 : Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.

22 : Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.

23 : Outcomes and characteristics of patients discharged alive from hospice.

24 : A national study of live discharges from hospice.

25 : Race, Ethnicity, and Other Risks for Live Discharge Among Hospice Patients with Dementia.

26 : Live Discharge From Hospice: A Systematic Review.

27 : Hospice care using home-based telemedicine systems.

28 : A cost measurement study for a home-based telehospice service.

29 : TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care.

30 : TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care.

31 : TeleHospice: A Community-Engaged Model for Utilizing Mobile Tablets to Enhance Rural Hospice Care.

32 : Ensuring Adequate Palliative and Hospice Care During COVID-19 Surges.

33 : Prolonged grief disorder following the Coronavirus (COVID-19) pandemic.

34 : Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health.

35 : Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer.

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

37 : Comparing the quality of death for hospice and non-hospice cancer patients.

38 : Family perspectives on end-of-life care at the last place of care.

39 : Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care.

40 : Factors Contributing To Geographic Variation In End-Of-Life Expenditures For Cancer Patients.

41 : Changes in Medicare costs with the growth of hospice care in nursing homes.

42 : Hospital at home: home-based end-of-life care.

43 : Hospital at home: home-based end-of-life care.

44 : Hospital at home: home-based end-of-life care.

45 : Hospital at home: home-based end-of-life care.

46 : Trends in Provision of Palliative Radiotherapy and Chemotherapy Among Hospices in the United States, 2011-2018.

47 : Functional trajectories in the year before hospice.

48 : Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015.

49 : Late referral to hospice and bereaved family member perception of quality of end-of-life care.

50 : Family Perspectives on Hospice Care Experiences of Patients with Cancer.

51 : Association of Expanded VA Hospice Care With Aggressive Care and Cost for Veterans With Advanced Lung Cancer.

52 : Are patient preferences for life-sustaining treatment really a barrier to hospice enrollment for older adults with serious illness?

53 : "I'm not ready for hospice": strategies for timely and effective hospice discussions.