Hospice (PDQ®): Supportive care - Health Professional Information [NCI]

Introduction

Health care professionals and health care systems face many challenges when caring for patients at the end of life (EOL). While hospice is designed specifically for EOL care, patients may decline it for valid reasons. These reasons may include difficulty accepting mortality, the desire to enroll in a clinical trial for a progressive cancer with no other standard treatment options, or the desire to continue receiving transfusions for a hematological malignancy. However, for patients with advanced cancer who prioritize comfort, hospice is the recommended model of care. It is important for oncologists to understand the requirements for and services provided by hospice care as they refer and counsel patients and families.

About Hospice

Hospice uses an interdisciplinary approach to provide expert medical care, pain management, and emotional and spiritual support for patients with advanced cancer who:

• Have a prognosis of 6 months or less if their disease runs its natural course.
• Choose not to receive therapies that are primarily intended to prolong life or that treat the underlying disease but do not provide symptomatic benefit.

Such treatments may include continued use of cancer-directed therapies, the use of machines such as a ventilator or dialysis, or artificial nutrition or hydration. These types of therapies are often referred to as life-prolonging treatment or disease-directed therapy. However, clinicians may vary in their use of those terms and how they categorize specific therapies. Additionally, while a Do Not Resuscitate order (DNR) is not a requirement for hospice care, the patient's wishes for hospice may need additional clarification if they desire Full Code status (resuscitation measures are given to keep a patient alive).

In contrast to life-prolonging treatment, hospice care focuses on quality of life. A unique aspect of hospice is that in addition to the patient, it intentionally considers the family as part of the unit of care. Support and education for family members are critical aspects of hospice care, including after the patient has died.

The current delivery of hospice in the United States is based on the Medicare hospice care benefit, which began in 1982. The Centers for Medicare and Medicaid Services (CMS) provides oversight for the administration of the Medicare hospice care benefit and has published health and safety requirements that hospice agencies are required to meet, called the Conditions of Participation. In general, these requirements shape the structure and operations of hospice agencies. Patients may receive hospice care from an insurer other than Medicare, such as Medicaid or private insurance; the specific regulations for that care are variable. In this summary, the term hospice refers to an approach to care, as well as to health care organizations that deliver hospice care. Information related to regulatory requirements, such as eligibility, coverage, and required services, is specific to the CMS Conditions of Participation and the Medicare hospice care benefit.

Hospice Versus Palliative Care

Hospice care is similar to palliative care in that both are interdisciplinary approaches to providing symptom management and support to a broad group of patients with serious illness. However, palliative care is provided to patients who are concurrently receiving curative and life-prolonging therapies, as well as to patients who do not meet the criteria for hospice care or who decline hospice enrollment due to associated restrictions. These criteria and restrictions are described below.

Benefits of Hospice

Hospice care offers many benefits to patients, their families, and caregivers, including the following:

• A holistic approach to care by an interdisciplinary care team. This team consists of a group of health care professionals from different disciplines working together to deliver care. The hospice care team may also be described as the interdisciplinary team.
• 24/7 access to on-call nurses and other clinicians.
• Specialty symptom management and psychosocial support.
• Better quality of life for patients and families, with families being more likely to report their loved ones had a "good death" with hospice care.[1,2,3] One study of 332 patients with advanced cancer found that longer time spent in hospice care (>2 months) was associated with significantly better quality of life, compared with patients who received more aggressive medical care.[4]
• Lower levels of post-traumatic stress disorder, prolonged grief, and physical and emotional distress among family members of patients who die at home with hospice, compared with family members of those who die in the hospital or intensive care unit.[5]
• Decreased hospitalization, intensive care utilization, and emergency room visits.[6,7]
• Increased likelihood of dying in a nonacute care setting [8] and increased likelihood of dying at home for patients who prefer to do so.[9]
• Reduced health care expenses for patients in the last year of life.[7]

Determining Appropriateness for Hospice

To qualify for hospice care, patients must have a life expectancy of 6 months or less if the illness runs its normal course.

Patients who are appropriate for hospice desire a comfort-oriented approach and wish to forego life-prolonging and curative treatments. Hospice is often considered when patients continue to decline despite therapy, when curative or life-prolonging treatments are no longer deemed beneficial, and when the burdens of curative or life-prolonging treatments outweigh their benefits.

A DNR is not a requirement for hospice care. However, a patient referred for hospice who desires Full Code status may need further clarification around what hospice care entails and their wishes for EOL care.

Patients for whom hospice is not appropriate

The following types of patients are not appropriate candidates for hospice:

• Patients who would qualify for hospice but want to receive active cancer-directed treatment and/or enroll in clinical trials.
• Patients who want to return to the hospital for treatment of infection, dehydration, or other complications. Note that if a patient is in hospice care and goes to the emergency department or is admitted to the hospital, he or she may be financially responsible for these charges if they are outside the hospice plan of care. For more information, see Financial Aspects of Hospice.

Several specific therapies may be barriers to patients receiving hospice care. The potential to receive these therapies varies among hospice agencies and depends on a patient's specific clinical history. These therapies include the following:

• Blood product transfusions. Transfusions are generally not available in hospice, though they may be coordinated in rare circumstances.
• Dialysis. Ongoing dialysis is generally not available in hospice. However, some hospice agencies may agree to cover dialysis for a set time, with a plan to then discontinue. Additionally, some hospice providers may consider the need for dialysis to be unrelated to the patient's terminal prognosis, which would allow the patient to continue receiving dialysis through their primary insurance.
• Radiation therapy. While radiation therapy can have symptomatic benefits, coverage varies across hospices, as the therapy can be expensive. It may be more feasible for a hospice to cover radiation therapy if it can be consolidated into one fraction.
• Artificial nutrition and hydration. Some hospices may agree to cover artificial nutrition and/or hydration for a set period if it aligns with the goals of the patient and family.
• Parenteral and oral antibiotics. Some hospices may agree to cover parenteral and oral antibiotics for a set period if it aligns with the goals of the patient and family.

References:

1. Cagle JG, Pek J, Clifford M, et al.: Correlates of a good death and the impact of hospice involvement: findings from the national survey of households affected by cancer. Support Care Cancer 23 (3): 809-18, 2015.
2. Teno JM, Clarridge BR, Casey V, et al.: Family perspectives on end-of-life care at the last place of care. JAMA 291 (1): 88-93, 2004.
3. Wallston KA, Burger C, Smith RA, et al.: Comparing the quality of death for hospice and non-hospice cancer patients. Med Care 26 (2): 177-82, 1988.
4. Wright AA, Zhang B, Ray A, et al.: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300 (14): 1665-73, 2008.
5. Wright AA, Keating NL, Balboni TA, et al.: Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol 28 (29): 4457-64, 2010.
6. Bergman J, Saigal CS, Lorenz KA, et al.: Hospice use and high-intensity care in men dying of prostate cancer. Arch Intern Med 171 (3): 204-10, 2011.
7. Obermeyer Z, Makar M, Abujaber S, et al.: Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA 312 (18): 1888-96, 2014.
8. Saito AM, Landrum MB, Neville BA, et al.: Hospice care and survival among elderly patients with lung cancer. J Palliat Med 14 (8): 929-39, 2011.
9. Jeurkar N, Farrington S, Craig TR, et al.: Which hospice patients with cancer are able to die in the setting of their choice? Results of a retrospective cohort study. J Clin Oncol 30 (22): 2783-7, 2012.

Understanding Hospice Care

Hospice is intended to provide practically all the care that a patient needs. Its comprehensive coverage has several components, including an interdisciplinary team, multiple levels of care to meet patient and caregiver needs, and bereavement care.

The Hospice Interdisciplinary Team

Hospice engages an interdisciplinary team to care for patients and families. This team includes the following:

• Registered hospice nurse. Often called the case manager, this person is responsible for skilled nursing care, including symptom management and wound care, education of the family and caregivers, and coordination of other team members. The registered hospice nurse also assesses patient and family needs during each visit and assesses safety concerns.
• Hospice attending physician. This person is the designated attending physician who provides hospice services along with the hospice agency. The patient can request their primary oncologist to be the hospice attending physician, which allows continued involvement in the patient's care. If the hospice attending physician is not available on evenings or weekends, then the hospice medical director can fill in.
• Hospice medical director. This person serves as the medical expert in symptom management and assists with administrative duties. The hospice medical director works for the hospice and can assume the role of hospice attending physician if desired by the patient or will work with the patient's designated attending clinician. The hospice medical director is also responsible for evaluating a patient's prognosis at each certification period to determine eligibility to remain in hospice.
• Social worker. This person provides broad psychosocial support for patients, families, and caregivers; assists with accessing local resources for caregiving and social supports; and discusses funeral planning and bereavement.
• Chaplain. A chaplain addresses the spiritual needs of patients, families, and caregivers. This individual can offer support for all patients, regardless of religious beliefs, and can liaise with other clergy as needed. A chaplain may also provide bereavement services.
• Hospice aides. Hospice aides are certified nursing assistants who provide personal care to the patient, including bathing, toileting, dressing, feeding, and oral care. They are typically available for limited amounts of time.
• Hospice volunteers. These people serve as companions to people at end of life. They help family caregivers in a variety of ways. Hospice agencies also use volunteers to help with administrative tasks.
• Additional services. Physical therapy, occupational therapy, pharmacy assistance, speech therapy, and nutrition support are provided based on need and availability. While these services vary among hospices, they are generally limited and consist of a one-time evaluation and education session. Some hospices may also offer additional services such as massage therapy, Reiki therapy, and music therapy.

Frequency of Visits by Team Members

One of the biggest misunderstandings of home hospice care is the perception that the agency provides 24-hour caregiving. In fact, family members or other caregivers, including friends, privately paid caregivers, or facility staff, are primarily responsible for the patient's day-to-day care. The number and frequency of visits by hospice team members vary, depending on the hospice agency and patient need. Nursing visits are required only every 14 days at a minimum; however, they may occur more often, even daily, depending on the situation. Hospice teams provide access to triage care 24 hours per day via telephone to respond to any acute issues.

Location of Hospice Care

Hospice care can be provided anywhere the patient calls home, including the patient's actual home, a nursing home, an assisted living facility, a freestanding inpatient facility (often called a hospice home), a homeless shelter, a prison, or a hospital.

Levels of Hospice Care

The four levels of hospice care delivery include the following:

• Routine care. This level of care applies to most hospice patients. The patient is generally stable, and the patient's symptoms, like pain or nausea and vomiting, are adequately controlled. Care is generally delivered in the patient's residence, either a home or facility.
• Continuous home care. This coverage can be added when a patient has unmanaged symptoms, such as severe pain needing frequent assessment and dose adjustment, respiratory distress, or delirium requiring frequent change of medication dose or schedule. The hospice agency can provide nurses who are present in the patient's home/location of care for 8 to 24 hours per day to give medications for the period of time that symptoms are not managed. This level of care is intended to be short-term.
• General inpatient care. This crisis-like level of care is for patients with symptoms that cannot be managed in a home-like environment. This level of care is intended to be short-term and may be delivered in a hospital, nursing home, or inpatient hospice facility, depending on the hospice agency. Patients must be assessed daily and, once stabilized, are returned to a lower level of care. General inpatient care cannot be used in the last few days of life in a hospital if symptoms are controlled. If a patient qualifies for this level of care, room and board will be covered by the health insurance plan.
• Respite care. This temporary care provides time off for the patient's primary caregivers. This is often used for a temporary breakdown in support at home or when caregivers have temporary needs that make them unable to deliver care, such as an out-of-town trip or having a medical procedure of their own. It may be provided in a hospital, nursing home, or inpatient hospice facility, depending on the hospice agency. Respite care is generally available for five consecutive nights every 60 to 90 days.

Bereavement Care

Grief is a normal reaction to the experience of losing a loved one through death. Most individuals experience normal grief after a loss, in which they gradually move toward acceptance of the loss and can continue with daily activities. However, some individuals may experience complicated grief, which is characterized by persistent and pervasive distress leading to disability.[1] Supportive services in the form of bereavement care and grief counseling can benefit individuals with both normal and complicated grief.[2,3,4,5,6] For more information, see Grief, Bereavement, and Coping With Loss.

Bereavement care is a mandated component of all hospice programs. The Centers for Medicare and Medicaid Services (CMS) requires hospices to include a pastoral or other counselor as a member of the interdisciplinary team. When a patient is admitted to hospice, the interdisciplinary team must complete a bereavement assessment to evaluate the social, spiritual, and cultural factors that may impact the family's ability to cope with the patient's death. This assessment is then integrated into the patient's hospice plan of care. Additionally, CMS mandates that every hospice must have an organized program for bereavement that provides services to families and other individuals for up to 1 year following the death of the patient.

This continued access to bereavement services is one of the primary benefits of hospice care for family members. Even if the patient is only enrolled with hospice for a short period of time before death, the ongoing bereavement support can be immensely valuable for families and caregivers. However, there can be significant variability across hospice programs in the type of bereavement services offered. For example, a national web-based survey of 591 hospices reported that while 98% of hospices offer telephone calls or cards to bereaved family members, only 79% offer grief support groups and only 71% offer individual therapy.[7] Clinicians, patients, and families may wish to consider the scope of bereavement service offerings in selecting a hospice program.

References:

1. Prigerson HG, Horowitz MJ, Jacobs SC, et al.: Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med 6 (8): e1000121, 2009.
2. Boelen PA, de Keijser J, van den Hout MA, et al.: Treatment of complicated grief: a comparison between cognitive-behavioral therapy and supportive counseling. J Consult Clin Psychol 75 (2): 277-84, 2007.
3. Rosner R, Pfoh G, Kotoučová M: Treatment of complicated grief. Eur J Psychotraumatol 2: , 2011.
4. Piper WE, McCallum M, Joyce AS, et al.: Patient personality and time-limited group psychotherapy for complicated grief. Int J Group Psychother 51 (4): 525-52, 2001.
5. Piper WE, Ogrodniczuk JS, Joyce AS, et al.: Group composition and group therapy for complicated grief. J Consult Clin Psychol 75 (1): 116-25, 2007.
6. Shear K, Frank E, Houck PR, et al.: Treatment of complicated grief: a randomized controlled trial. JAMA 293 (21): 2601-8, 2005.
7. Barry CL, Carlson MD, Thompson JW, et al.: Caring for grieving family members: results from a national hospice survey. Med Care 50 (7): 578-84, 2012.

Disparities in Hospice Utilization

Multiple studies have consistently shown disparities in hospice enrollment. Populations who are less likely to be enrolled in hospice care at the end of life (EOL) include the following:

• Patients identifying as belonging to a racial or ethnic minority group.[1,2,3,4,5] One study of 54,256 Medicare beneficiaries who had undergone lung, esophageal, pancreatic, colon, or rectal cancer resection found that White patients were more likely than Black and Hispanic patients to use hospice care (odds ratio [OR] 1.24; 95% confidence interval [CI], 1.17–1.31).[2]
• Patients living in rural environments.[3,6] A study of 31,460 Medicare beneficiaries with pancreatic cancer found that patients in small towns (adjusted OR, 0.77; 95% CI, 0.69–0.86) and rural areas (adjusted OR, 0.75; 95% CI, 0.66–0.85) had lower adjusted odds of receiving hospice care than patients in metropolitan areas.[6]
• Patients with lower socioeconomic status.[3]

Prospective studies are needed to better define hospice utilization disparities and help identify methods to narrow this gap in care. Specific interventions geared to these populations may include:

• Implementing hospice education programs for patients and caregivers that are culturally tailored to specific groups.[7]
• Providing access to non-English, relevant educational and advance care planning materials and offering additional training to language interpreters related to advanced illness and the EOL.[8]
• Prioritizing access to hospice care in rural and socioeconomically disadvantaged settings.[9]

References:

1. Paredes AZ, Hyer JM, Palmer E, et al.: Racial/Ethnic Disparities in Hospice Utilization Among Medicare Beneficiaries Dying from Pancreatic Cancer. J Gastrointest Surg 25 (1): 155-161, 2021.
2. Abbas A, Madison Hyer J, Pawlik TM: Race/Ethnicity and County-Level Social Vulnerability Impact Hospice Utilization Among Patients Undergoing Cancer Surgery. Ann Surg Oncol 28 (4): 1918-1926, 2021.
3. Parajuli J, Tark A, Jao YL, et al.: Barriers to palliative and hospice care utilization in older adults with cancer: A systematic review. J Geriatr Oncol 11 (1): 8-16, 2020.
4. Mullins MA, Ruterbusch JJ, Clarke P, et al.: Trends and racial disparities in aggressive end-of-life care for a national sample of women with ovarian cancer. Cancer 127 (13): 2229-2237, 2021.
5. Smith AK, Earle CC, McCarthy EP: Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc 57 (1): 153-8, 2009.
6. Ramkumar N, Wang Q, Brooks GA, et al.: Association of rurality with utilization of palliative care and hospice among Medicare beneficiaries who died from pancreatic cancer: A cohort study. J Rural Health 39 (3): 557-564, 2023.
7. Jones T, Luth EA, Lin SY, et al.: Advance Care Planning, Palliative Care, and End-of-life Care Interventions for Racial and Ethnic Underrepresented Groups: A Systematic Review. J Pain Symptom Manage 62 (3): e248-e260, 2021.
8. Dressler G, Cicolello K, Anandarajah G: "Are They Saying It How I'm Saying It?" A Qualitative Study of Language Barriers and Disparities in Hospice Enrollment. J Pain Symptom Manage 61 (3): 504-512, 2021.
9. Tobin J, Rogers A, Winterburn I, et al.: Hospice care access inequalities: a systematic review and narrative synthesis. BMJ Support Palliat Care 12 (2): 142-151, 2022.

Barriers to Hospice Utilization

Barriers to hospice utilization include multiple variables among patients and caregivers, oncology providers, and hospice agencies.

Patient and Caregiver Perspectives

Studies of patient and caregiver perspectives have identified several types of barriers to hospice utilization:

• Discussing end-of-life (EOL) care may be difficult for patients, as it may be perceived as signaling weakness and failure.[1]
• A patient's understanding of their prognosis influences their EOL decisions. Patients who report their cancer as "likely curable" are significantly less likely to enroll in hospice, compared with patients who report their health status as "terminally ill." [2] For more information, see the Preference for information about prognosis section in Communication in Cancer Care.
• There are widespread misperceptions regarding hospice eligibility and coverage.[3] Families may be uncertain about the value of hospice or may think hospice is only for the final hours to days of life.[4]
• Patients may have concerns about losing continuity with their current health care providers.[4]
• Some patients and families referred to hospice may decline to enroll based on the initial visit, expressing concerns about how hospice care is presented, such as focusing on which services are not covered.[4]

Oncology Provider Perspective

Oncology providers determining whether or not to refer to hospice care may experience:

• Difficulty prognosticating a 6-month life expectancy based on the unpredictability of specific cancer types and the evolving treatment landscape.[5]
• Hesitancy to discuss EOL care planning with patients and families.[5]

Hospice Agency Perspective

Hospice agencies may have the following concerns:

• Patients who do not have adequate caregiving support at home may present safety issues and require more care than the hospice can provide.
• Patients with an unclear prognosis may have a long length of stay in hospice, which is a quality measure scrutinized by the Centers for Medicare and Medicaid Services.[5]
• There may be financial barriers. The daily hospice rate may not cover expensive care, and hospice may not be able to pay for more expensive care. A national survey of 591 hospice providers found that 78% had at least one policy in place that may restrict access for patients with potentially high-cost medical care needs. Smaller hospices and for-profit hospices reported more limited enrollment policies.[6]
• Hospice workforce shortages may limit the ability to accept referrals and take on new patients.

Addressing Misconceptions About Hospice

Patients, families, and providers may hold common misconceptions about hospice. It may be helpful for clinicians to educate individuals on the following points:

• The goal of opioids is to provide comfort, not to hasten death. The goal is to optimize comfort by managing pain and air hunger. A study of opioids at the EOL found no impact on survival.[7]
• Once patients receive hospice care, they can always change their mind. Patients can revoke hospice and revert to their former insurance coverage. For example, if a patient changes his or her mind and wants to receive cancer-directed therapy and to be admitted to the hospital for a cancer-related complication, the patient can sign papers to revoke the hospice benefit, and regular insurance will resume.
• Hospice care is not limited to patients in the last days or weeks of life. Any patient with an expected prognosis of 6 months or less could be eligible for hospice. Patients are often not referred to hospice until very late in their disease course, resulting in short lengths of stay in hospice and reduced opportunities to benefit from care by the interdisciplinary team.
• Hospice coverage is not limited to 6 months of care. As long as a patient continues to meet the criteria for the hospice benefit, there is no limit to the duration of coverage. Patients on hospice are evaluated regularly for prognosis. Even if they have already received 6 months of hospice, if the hospice physician thinks their life expectancy remains less than 6 months, the patient can continue on hospice care.
• Hospice does not provide 24/7 care in the home. Except in crisis situations or for respite care, hospice only provides a limited number of home health aide hours and nursing visits per week. The responsibility for daily care is fulfilled by family or other caregivers. The minimum requirement for nursing visits by a hospice is once every 14 days.
• A Do Not Resuscitate order is not mandatory to enroll in hospice. As the patient experiences functional decline, the interdisciplinary hospice team will continue to have discussions about goals of care, including resuscitation at the EOL. If after ongoing discussion with the hospice team, the patient and family wish to continue Full Code status, they would typically need to activate emergency services at the time of significantly worsening condition and seek care outside the hospice plan of care.

References:

1. Mrig EH, Spencer KL: Political economy of hope as a cultural facet of biomedicalization: A qualitative examination of constraints to hospice utilization among U.S. end-stage cancer patients. Soc Sci Med 200: 107-113, 2018.
2. Gray TF, Plotke R, Heuer L, et al.: Perceptions of prognosis and end-of-life care outcomes in patients with advanced lung and gastrointestinal cancer. Palliat Med 37 (5): 740-748, 2023.
3. Cagle JG, Van Dussen DJ, Culler KL, et al.: Knowledge About Hospice: Exploring Misconceptions, Attitudes, and Preferences for Care. Am J Hosp Palliat Care 33 (1): 27-33, 2016.
4. Vig EK, Starks H, Taylor JS, et al.: Why don't patients enroll in hospice? Can we do anything about it? J Gen Intern Med 25 (10): 1009-19, 2010.
5. Patel MN, Nicolla JM, Friedman FAP, et al.: Hospice Use Among Patients With Cancer: Trends, Barriers, and Future Directions. JCO Oncol Pract 16 (12): 803-809, 2020.
6. Aldridge Carlson MD, Barry CL, Cherlin EJ, et al.: Hospices' enrollment policies may contribute to underuse of hospice care in the United States. Health Aff (Millwood) 31 (12): 2690-8, 2012.
7. Morita T, Tsunoda J, Inoue S, et al.: Effects of high dose opioids and sedatives on survival in terminally ill cancer patients. J Pain Symptom Manage 21 (4): 282-9, 2001.

Financial Aspects of Hospice

Payment for hospice care is covered by one of the following and paid to the hospice agency:

• Medicare Part A.
• Medicaid.
• HMO.
• Private insurance.
• Veteran benefits.

Current reimbursement rates for hospice care are usually based on a per-diem rate determined by the patient's level of care (see the Levels of Hospice Care section) and geographic location. Hospice is intended to pay for practically all the medical care the patient receives. Typically, this care includes the following:

• Visits from interdisciplinary team members, excluding hospice attending professional fees, which may be billed separately to Medicare.
• Durable medical equipment, such as a hospital bed, wheelchair, shower bench, and bedside commode.
• Prescription medications for symptom management and those related to the patient's terminal condition.

Exclusions from Coverage

Hospice is not responsible for care that is outside of the hospice plan of care. In general, if adult patients attend health care visits that are not coordinated with and approved by the hospice agency, they may be financially liable for the cost of that care. Similarly, if patients seek hospitalization with life-prolonging therapies while on hospice care, they may be financially liable for the cost of that care. Patients may always revoke hospice services and revert to prior insurance to seek hospitalization and life-prolonging therapies. These general rules do not apply to pediatric patients younger than 21 years (see the Pediatric Hospice section) or veterans who receive care through U.S. Department of Veterans Affairs health care systems (see the Concurrent Care With Hospice Care section.

While certain therapies or interventions may provide comfort or palliate symptoms, they may still not be covered by hospice if they are cost prohibitive. Frequent examples are blood product transfusions, dialysis, and palliative radiation or cancer-directed therapy. Coverage for these therapies varies by hospice. If the patient wants these therapies while in hospice, the oncologist should contact the hospice agency directly to see if these services can be covered.

Additionally, hospice does not cover room and board at a nursing home or assisted living facility and does not cover 24-hour care at home.

Billing Guidance for Patients in Hospice

When enrolling patients in hospice, the hospice team becomes responsible for managing their insurance benefit, coordinating patient care, and reviewing all health care appointments. Medicare will only pay for the professional services of medically necessary visits with an oncologist if this provider is serving as the hospice attending physician (see The Hospice Interdisciplinary Team section). Medicare will not separately reimburse for laboratory tests, medical imaging, or procedures related to the terminal diagnosis. Oncologists may need to add specific modifiers to their claims to be reimbursed.

If the oncologist is not the hospice attending physician, the professional services fees will go to the hospice agency, and the patient will likely be financially responsible unless another arrangement was previously approved by the hospice agency.

Pediatric Hospice

Among the 30,000 pediatric deaths each year in the United States, approximately 8,000 children (27%) and their families with any health condition use hospice care at the end of life.[1,2] The percentage of pediatric patients with cancer who use hospice ranges from 35% to 80%.[3,4,5,6]

Hospice care is available to pediatric patients with advanced cancer and is considered one form of palliative care. Licensed hospice agencies provide services, although many in the United States lack pediatric services, and most hospice nurses lack expertise in pediatric care.[7] Pediatric hospice care is often given in the home but can occasionally be provided in self-standing hospice houses or inpatient units, depending on the county a patient lives in or the particular hospice organization. Pediatric hospice services generally include nursing, physician, home health aide, psychosocial, spiritual, therapy, and bereavement services, as well as symptom-focused medication and durable medical equipment. Pediatric hospice may not be available to all children depending on their level of medical complexity, technology dependence, insurance, and where they live.

Pediatric hospice has significant differences compared with adult hospice. A major difference is that many children can receive concurrent care, meaning they can receive hospice services while continuing to receive any and all other services indicated for treating their terminal illness. In 2010, the Concurrent Care for Children Provision (Section 2302) of the Patient Protection and Affordable Care Act specified that children and adolescents younger than 21 years with a life expectancy of less than 6 months who are enrolled in Medicaid or the Children's Health Insurance Program can receive both hospice services and life-extending or disease-directed cancer therapy. This law removed "foregoing curative therapy" as a criterion for hospice admission in this patient population, although patients and families with private insurance or those who do not wish to continue medical treatments continue to have access to standard comfort-focused hospice care.[8] Children with cancer who receive concurrent care hospice services can continue to receive chemotherapy, targeted therapy, radiation therapy, clinical trials, and transfusions, for example, to try to slow the growth of cancer or manage side effects. A 2011–2013 study of Medicaid recipients with a variety of diagnoses showed that concurrent care resulted in longer length of stays (88.5 days vs. 48.8 days) and reduced hospice discharges (by a factor of 3), although it did not reduce emergency or inpatient care.[9]

Compared with adult patients, children referred to hospice often have very complex medical, technological, equipment, prescription, and social needs, leading to higher costs.[10,11] A comprehensive upfront sign-out and ongoing communication between primary medical teams and hospice teams is recommended to reduce communication gaps, family frustration, and feelings of abandonment.

One of the most significant misconceptions about pediatric hospice care pertains to losing the primary or hospital-based team. When patients receive concurrent hospice care, they and their families may continue to receive reimbursable medical care and visits with their primary oncology and palliative care teams, while simultaneously receiving home-based hospice services. Other misconceptions about pediatric hospice are similar to those for adult-focused hospice care. For more information, see the Addressing Misconceptions About Hospice section.

Table 1 shows a brief comparison of adult and pediatric hospice.[12,13]

Table 1. Comparing Adult and Pediatric Hospice

Adult Hospice	Concurrent Care Pediatric Hospice
Focus on improving quality of life for patients with terminal illness	Focus on improving quality of life for patients with terminal illness
Restricted to patients with a life expectancy of 6 months or less if the disease runs its natural course	Restricted to patients with a life expectancy of 6 months or less if the disease runs its natural course
Restricts delivery of disease-directed or life-prolonging therapies	Permits concurrent delivery of hospice care and treatment of the terminal illness (in most cases)
Program requirements and regulations set at the federal level and are consistent across states	Program requirements and regulations set at the state level and can vary broadly across states in scope and coverage of services
Broadly accessible throughout the United States	Accessibility is variable throughout the United States

Disparities in hospice use and end-of-life care for pediatric patients have been documented. Results vary, depending on the study, institution, and location. In a retrospective observational study of 1,492 children, of whom 44% had Medicaid and 56% had commercial insurance, those with Medicaid were less likely to die at home (relative risk [RR], 0.82; 95% confidence interval [CI], 0.73–0.92). Overall, 40% of children died at home, and 45% enrolled in hospice for a median of 2 days. Hospice enrollment rates did not vary by insurance type. However, Medicaid-enrolled children spent less time in hospice care than privately insured children. The effect of race on hospice enrollment has varied by study, with some institutional studies showing no effect. However, in a larger claims-based study, among children with Medicaid, Black children were the least likely to enroll in hospice (RR, 0.71; 95% CI, 0.55–0.91).[14] In a separate study of U.S. decedents from the Shared Data and Research database, 79 pediatric patients who died of cancer from 2017 to 2021 often reported more than two distressing symptoms before death, yet only 17% enrolled in hospice. Children in families with an annual household income of $50,000 or less were less likely to receive hospice care than those in families with higher incomes.[15] In addition, several studies have shown that even when enrolled in hospice or receiving pediatric palliative care, Black children were less likely to die at home [14,16] and more likely to receive hospital-based intensive interventions at the end of life, [17] although this may be goal-concordant.[18]

Patients referred to pediatric hospice often have very complex medical and social needs. These needs often warrant more comprehensive sign-out and ongoing communication between primary medical teams and hospice teams.

References:

1. Keim-Malpass J, Cozad MJ, Svynarenko R, et al.: Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013. J Spec Pediatr Nurs 26 (4): e12333, 2021.
2. Lindley LC, Cohrs AC, Keim-Malpass J, et al.: Children Enrolled in Hospice Care Under Commercial Insurance: A Comparison of Different Age Groups. Am J Hosp Palliat Care 36 (2): 123-129, 2019.
3. Kaye EC, Gushue CA, DeMarsh S, et al.: Illness and end-of-life experiences of children with cancer who receive palliative care. Pediatr Blood Cancer 65 (4): , 2018.
4. Thienprayoon R, Lee SC, Leonard D, et al.: Racial and ethnic differences in hospice enrollment among children with cancer. Pediatr Blood Cancer 60 (10): 1662-6, 2013.
5. Brock KE, Steineck A, Twist CJ: Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients. Pediatr Blood Cancer 63 (3): 516-22, 2016.
6. Brock KE, DeGroote NP, Roche A, et al.: The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care. J Pain Symptom Manage 64 (3): 287-297.e1, 2022.
7. Kaye EC, Gattas M, Kiefer A, et al.: Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses. J Pain Symptom Manage 57 (2): 241-250, 2019.
8. Lindley LC, Keim-Malpass J, Svynarenko R, et al.: Pediatric Concurrent Hospice Care: A Scoping Review and Directions for Future Nursing Research. J Hosp Palliat Nurs 22 (3): 238-245, 2020.
9. Lindley LC, Cozad MJ, Mack JW, et al.: Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care. Am J Hosp Palliat Care 39 (10): 1129-1136, 2022.
10. Dingfield L, Bender L, Harris P, et al.: Comparison of pediatric and adult hospice patients using electronic medical record data from nine hospices in the United States, 2008-2012. J Palliat Med 18 (2): 120-6, 2015.
11. Cozad MJ, Svynarenko R, Hinds PS, et al.: Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model. Am J Hosp Palliat Care 39 (12): 1436-1442, 2022.
12. Keim-Malpass J, Hart TG, Miller JR: Coverage of palliative and hospice care for pediatric patients with a life-limiting illness: a policy brief. J Pediatr Health Care 27 (6): 511-6, 2013.
13. National Hospice and Palliative Care Organization: NHPCO Pediatric Facts and Figures. Alexandria, VA: National Hospice and Palliative Care Organization, 2023. Available online Last accessed Jan. 9, 2024.
14. Johnston EE, Davis ES, Bhatia S, et al.: Location of death and hospice use in children with cancer varies by type of health insurance. Pediatr Blood Cancer 69 (8): e29521, 2022.
15. Ananth P, Lindsay M, Nye R, et al.: End-of-life care quality for children with cancer who receive palliative care. Pediatr Blood Cancer 69 (9): e29841, 2022.
16. Cawkwell PB, Gardner SL, Weitzman M: Persistent racial and ethnic differences in location of death for children with cancer. Pediatr Blood Cancer 62 (8): 1403-8, 2015.
17. Johnston EE, Alvarez E, Saynina O, et al.: Disparities in the Intensity of End-of-Life Care for Children With Cancer. Pediatrics 140 (4): , 2017.
18. Umaretiya PJ, Li A, McGovern A, et al.: Race, ethnicity, and goal-concordance of end-of-life palliative care in pediatric oncology. Cancer 127 (20): 3893-3900, 2021.

Coordination Between Hospice and Emergency Medical Systems

Hospice is responsible for practically all care of the patient, including any urgent or emergent needs that occur during the day or after hours. Hospices provide 24-hour access to an emergency line and can make urgent visits for patient needs. This service is encouraged so the hospice can manage the situation with guidance for caregivers, an urgent visit to the home, or a higher level of care, such as continuous home care or general inpatient care.

However, patients receiving hospice care may still engage with the traditional emergency medical system. This may happen if the patient or family calls 911 or goes to the emergency department. In some cases, the hospice may instruct the family to proceed to the emergency department if they cannot manage the emergency situation. Examples include unmanaged symptoms, a change in goals of care, and a new serious injury such as a hip fracture.

These situations can be difficult for emergency medical teams because patients enrolled in hospice may not want the invasive procedures or hospitalizations that would be indicated for patients focused on life prolongation. Important information related to these scenarios includes the following:

• Emergency medical staff should be notified that the patient is enrolled in hospice as soon as possible. Families may call 911 out of instinct during a crisis, but the patient's goals of care may remain comfort focused. This should be clarified as soon as possible to determine the plan of care. Providers referring hospice patients to the emergency department should clearly communicate to the emergency team about the consult question and the patient's code status, prognosis, and patient preferences.
• The hospice agency should be notified that the patient is engaging with emergency medical services. The hospice can coordinate with the emergency medical team to clarify what would be included in the hospice plan of care and to determine if hospice resources can manage the emergency situation, such as having the patient transfer to an inpatient hospice facility.
• Patients may be liable for the cost of emergency care that is outside of the hospice plan of care. Care should be coordinated with the hospice staff to determine what interventions would be supported. If patients wish to pursue treatment that is outside the hospice plan of care, such as hospitalization or intensive care, they can either assume financial responsibility or revoke hospice care. When hospice care is revoked, patients immediately revert to their primary insurance.

Alternative Models of Hospice Care

Concurrent Care With Hospice Care

One alternative model of hospice care is concurrent care with hospice, which is offered by U.S. Department of Veterans Affairs health care systems.

This model allows veterans to enroll in hospice care without restricting palliative treatments such as infusion therapies, transfusion of blood products, oral cancer agent administration, and palliative radiation. The use of the Concurrent Care model and hospice care have increased significantly in recent years.[1] This approach has been associated with less aggressive medical treatment, including lower likelihood of being admitted to an intensive care unit, and lower medical costs.[2]

Medicare Care Choices Model

The Medicare Care Choices Model (MCCM) tested offering eligible beneficiaries the option to receive supportive hospice services at the end of life (EOL) without forgoing payment for treatment of their terminal conditions, which is required to enroll in the traditional Medicare hospice benefit. Enrollment at participating hospices occurred over a 5 ½-year period, from Jan. 1, 2016, to June 30, 2021.

According to Medicare's analysis, MCCM participants were more likely than matched Medicare beneficiaries to have the following outcomes:[3]

• Greater likelihood of enrolling in the Medicare hospice benefit.
• Improved quality of EOL care, including more days spent at home.
• Reduced use of resource-intensive services, including 26% fewer inpatient hospital admissions and 14% fewer outpatient emergency department visits and observation stays.
• Reduced Medicare expenditures of $9,080 (17%) for MCCM participants compared with matched Medicare beneficiaries.

The positive results of this program are likely to influence future Medicare hospice models.

References:

1. Presley CJ, Han L, O'Leary JR, et al.: Concurrent Hospice Care and Cancer-Directed Treatment for Advanced Lung Cancer and Receipt of Aggressive Care at the End of Life in the Veteran's Health Administration. J Palliat Med 23 (8): 1038-1044, 2020.
2. Mor V, Wagner TH, Levy C, et al.: Association of Expanded VA Hospice Care With Aggressive Care and Cost for Veterans With Advanced Lung Cancer. JAMA Oncol 5 (6): 810-816, 2019.
3. Kranker K, Niedzwiecki R, Pohl V: Evaluation of the Medicare Care Choices Model: Annual Report 4. Baltimore, MD: Center for Medicare and Medicaid Services, April 2022. Available online.

Latest Updates to This Summary (05 / 02 / 2024)

The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.

Barriers to Hospice Utilization

Added text to state that hospice care is not limited to patients in the last days or weeks of life. Any patient with an expected prognosis of 6 months or less could be eligible for hospice. Patients are often not referred to hospice until very late in their disease course, resulting in short lengths of stay in hospice and reduced opportunity to benefit from care by the interdisciplinary team. Also added text that the minimum requirement for nursing visits by a hospice is once every 14 days.

Financial Aspects of Hospice

Added text to state that the exclusion from coverage rules do not apply to pediatric patients younger than 21 years or veterans who receive care through U.S. Department of Veterans Affairs health care systems.

Pediatric Hospice

This section was extensively revised.

This summary is written and maintained by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of NCI. The summary reflects an independent review of the literature and does not represent a policy statement of NCI or NIH. More information about summary policies and the role of the PDQ Editorial Boards in maintaining the PDQ summaries can be found on the About This PDQ Summary and PDQ® Cancer Information for Health Professionals pages.

About This PDQ Summary

Purpose of This Summary

This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about issues related to hospice planning, care, and finances. It is intended as a resource to inform and assist clinicians in the care of their patients. It does not provide formal guidelines or recommendations for making health care decisions.

Reviewers and Updates

This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).

Board members review recently published articles each month to determine whether an article should:

• be discussed at a meeting,
• be cited with text, or
• replace or update an existing article that is already cited.

Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.

The lead reviewers for Hospice are:

• Katharine Brock, MD, MS (Children's Healthcare of Atlanta)
• Jared R. Lowe, MD, HMDC (University of North Carolina School of Medicine)
• Andrea Ruskin, MD (VA Connecticut Healthcare System)

Any comments or questions about the summary content should be submitted to Cancer.gov through the NCI website's Email Us. Do not contact the individual Board Members with questions or comments about the summaries. Board members will not respond to individual inquiries.

Levels of Evidence

Some of the reference citations in this summary are accompanied by a level-of-evidence designation. These designations are intended to help readers assess the strength of the evidence supporting the use of specific interventions or approaches. The PDQ Supportive and Palliative Care Editorial Board uses a formal evidence ranking system in developing its level-of-evidence designations.

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The preferred citation for this PDQ summary is:

PDQ® Supportive and Palliative Care Editorial Board. PDQ Hospice. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/advanced-cancer/planning/hospice-hp-pdq. Accessed <MM/DD/YYYY>. [PMID: 38261695]

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Last Revised: 2024-05-02