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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.
Hospice uses an interdisciplinary approach to provide expert medical care, pain management, and emotional and spiritual support for patients with advanced cancer who:
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
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:
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:
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:
References:
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:
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:
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.[
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.[
References:
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:
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:
References:
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:
Oncology Provider Perspective
Oncology providers determining whether or not to refer to hospice care may experience:
Hospice Agency Perspective
Hospice agencies may have the following concerns:
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:
References:
Payment for hospice care is covered by one of the following and paid to the hospice agency:
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:
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.
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.[
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.[
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.[
Compared with adult patients, children referred to hospice often have very complex medical, technological, equipment, prescription, and social needs, leading to higher costs.[
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.[
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).[
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:
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:
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.[
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:[
The positive results of this program are likely to influence future Medicare hospice models.
References:
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
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
Board members review recently published articles each month to determine whether an article should:
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:
Any comments or questions about the summary content should be submitted to Cancer.gov through the NCI website's
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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PDQ is a registered trademark. Although the content of PDQ documents can be used freely as text, it cannot be identified as an NCI PDQ cancer information summary unless it is presented in its entirety and is regularly updated. However, an author would be permitted to write a sentence such as "NCI's PDQ cancer information summary about breast cancer prevention states the risks succinctly: [include excerpt from the summary]."
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:
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Last Revised: 2024-05-02
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