Hospice

What is Hospice Care?

• Hospice care is compassionate end-of-life care that includes medical and supportive services intended to provide comfort to individuals who are terminally ill.
• Often referred to as “palliative care,” hospice care aims to manage the patient’s illness and pain, but does not treat the underlying terminal illness.
• Hospice care may include spiritual and emotional services for the patient, and respite care for the family.
• Hospice care is provided by a team of appropriate professionals.
• Many hospitals and skilled nursing facilities have hospice units, but most hospice care is provided at home.
• Hospice Care Goals include ensuring that the patient will:
  • Be as comfortable and pain-free as possible.
  • Be independent for as long as possible.
  • Receive care from family and friends.
  • Receive support through the stages of dying.
  • Die with dignity.

Quick Guide to Aid in Identifying Coverable Care

Hospice Care Can be Covered by Medicare if the following criteria are met:

1. The individual is entitled to Medicare Part A, or enrolled in a Medicare Advantage plan.
2. Both the attending physician (if the individual has one) and a hospice agency’s medical director or physician member of the hospice interdisciplinary team initially certify that the patient is terminally ill (see below). 
3. The individual or their authorized representative signs a hospice election form with a Medicare-certified hospice provider they have chosen. [Important note: By electing hospice, the patient acknowledges they understand that hospice care does not provide curative treatment, but focuses on providing comfort and symptom management. As such, the patient waives all rights to Medicare payment for items and services related to the treatment of the terminal condition and related conditions. They also understand that virtually all of the care they need should be provided by the hospice agency.]

Additional Information and Advocacy Tips

1. The attending physician is always the key to obtaining Medicare coverage. Obtain a statement from the beneficiary’s physician stating that the patient is terminally ill, that the services are reasonable and necessary for the comfort and management of the terminal illness.
2. The certification that an individual is terminally ill is based on the physician’s clinical judgment and must specify that the patient’s prognosis is for a life expectancy of six months or less if the terminal illness runs its normal course. Clinical information and documentation supporting the prognosis must be filed in the hospice medical record.
3. An individual does not have to have cancer to qualify for the Medicare hospice benefit.
4. An individual does not have to sign a “do not resuscitate” (DNR) order or have an advance directive to be eligible for covered hospice services.
5. An individual does not have to be homebound in order to elect hospice.
6. Eligible patients can elect hospice for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods. After the initial 90-day benefit period, only a hospice physician must recertify that the patient continues to be terminally ill. Before the third and later benefit periods, a hospice physician or nurse practitioner must have a face-to-face encounter with the patient to determine continued eligibility for coverage.
7. A hospice patient has a right to choose their attending physician. The election statement must identify the attending physician the patient has chosen to provide care to them.
8. The hospice plan of care must be created in collaboration with the attending physician, the patient or representative, and the primary caregiver, and must be reviewed and/or revised as the patient’s condition requires, but no less often than every 15 calendar days.
9. An individual may change hospice providers once each benefit period. An individual may revoke their hospice election at any time, and also re-elect hospice care at a later time.
10. An individual has a right to request an election statement addendum from their hospice provider at any time. It lists and explains the conditions, items, services, or drugs that the hospice considers to be unrelated to the patient’s terminal illness and related conditions and not needed for pain or symptom management. If the patient disagrees with the hospice’s determination, they can seek immediate advocacy through the Medicare Beneficiary and Family Centered Care-Quality Improvement Organization (BFCC-QIO).

Four Categories of Medicare-Covered Hospice Care:

1. Routine home care in the individual’s place of residence (e.g., private home, nursing home, assisted living facility, memory care).
2. Continuous home care during brief periods of crisis when hospice services are needed on a continuous basis to maintain the person at home. Care must be predominantly nursing care, but can include aide and homemaker services.
3. Short-term general inpatient care for pain control or acute or chronic symptom management which cannot be managed in other settings.
4. Short-term inpatient respite care when necessary to relieve the family members or other people caring for the individual.

Types of Covered Hospice Services:

1. Physician services.
2. Nursing care.
3. Physical, occupational, and speech-language pathology services for symptom control or to maintain activities of daily living and basic functional skills.
4. Medical social services.
5. Hospice aide, volunteer, and homemaker services.
6. Medical appliances and supplies, including drugs and biologicals.
7. Spiritual, dietary, and bereavement counseling services.

Patient Co-Insurance

• Drugs and Biologicals Co-insurance – 5% for medications during Routine Home Care or Continuous Home Care to a maximum per prescription of $5/month.
• Respite Care Co-insurance – The patient’s daily co-insurance is 5% of the Medicare payment per respite day. The co-insurance amount may not be more than the inpatient hospital deductible.

Resources:

• Model Example of Hospice Election Statement: Model Example of Hospice Election Statement (cms.gov)
• Model Example of “Patient Notification of Hospice Non-Covered Items, Services and Drugs:” Model Example of “Patient Notification of Hospice Non-Covered Items, Services, and Drugs” (cms.gov)
• Questions to Ask When Choosing a Hospice Provider – Booklet Co-Published by the Center for Medicare Advocacy and the National Association of Homecare and Hospice: Questions-for-Choosing-Hospice-Care-2022-Final.pdf (medicareadvocacy.org)
• To Find Medicare-Certified Hospices to Contact in Your Zip Code: Find Healthcare Providers: Compare Care Near You | Medicare

Differences Between the Medicare Hospice Benefit and Regular Medicare

• Medicare hospice coverage is limited to beneficiaries who are terminally ill.
• Hospice coverage is for pain and symptom management and comfort, not for curative treatment of the underlying terminal illness.
• Hospice coverage is holistic. Not only is medical care covered, but so are social work services, chaplain services, bereavement services and homemaker services.

A Comparison of Medicare Home Health and Hospice Benefits

¹ There are additional services that can be provided in the home, but are not included in the home health benefit. Medicare will pay for reasonable and necessary home health visits if all the following requirements are met: 1. Patient needs skilled care; 2. Patient is homebound; 3. Care is authorized by physician; and 4. Home Health agency is Medicare-certified. (42 CFR §409.42).
² Medicare will pay for hospice care if all the following requirements are met: 1. Prognosis that life expectancy is 6 months or less. (42 CFR §418.3) 2. Terminal illness is certified by physician; 3. Patient elects hospice benefit; 4. Care is specified in the hospice plan of care; and 5. Hospice program is Medicare-certified. (42 CFR §418.21, 418.22, 418.24).

Patient Rights

• To receive verbal and written notice of rights from the hospice provider in a language and manner that the patient understands.
• To be treated with respect.
• To voice grievances.
• To receive effective pain management and symptom control.
• To be involved in developing the hospice plan of care.
• To refuse treatment.
• To choose attending physician.
• To receive information about the services covered under the hospice benefit.
• To receive information about the scope of services that the hospice will provide and specific limitations on those services.

Hospice Medicare Appeals

Under Medicare, there are currently two methods of appeal available for denials of hospice care. The appeals are fraught with confusion and bureaucratic complications. To make matters worse, the two systems are not clearly named or demarcated. For purposes of this discussion, they will be referred to as “expedited appeals” and “standard appeals”.

1. Expedited Appeals

The right to an expedited appeal became effective on July 1, 2005.[1] Hospice patients have the right to an expedited appeal when their provider decides to discontinue hospice care entirely because it believes the patient no longer has a life expectancy of six months or less.[2] The hospice provider must give the beneficiary a standardized “valid written notice” at least two days prior to the cessation of care.[3] Among other pieces of information, the standardized notice must tell the beneficiary the date that coverage of services ends; the date that the beneficiary’s financial liability for continued services begins; and a description of the beneficiary’s right to an expedited determination.[4] This notice is valid when the beneficiary (or the beneficiary’s authorized representative) has signed and dated the notice to indicate that she has received the notice and can comprehend its contents.[5]

Providers are financially liable for continued services until two days after the beneficiary receives valid notice or until the service termination date specified on the notice, whichever is later.[6] A difficulty that often arises is that many agencies render both Medicare covered hospice and home health care. When beneficiaries are discharged from hospice care, they are often transferred to the agency’s home health program. Providers sometimes inappropriately believe that since the beneficiary is still getting care from the same organization, they do not have to issue the standard notice regarding expedited appeal. If no notice is issued, the beneficiary will never know that she had a right to have the hospice program’s discharge decision reviewed.

The standardized notice contains the telephone number for the Quality Improvement Organization (QIO) serving the beneficiary’s state. To exercise their right to an expedited review, beneficiaries must contact the QIO by no later than noon of the calendar day following receipt of the provider’s notice of termination.[7] This time frame is terribly short, and given that the hospice patient is obviously very sick, and caregivers and families may be disorganized or take some time to process the significance of the standardized notice, the deadline is frequently missed. If beneficiaries make untimely requests, they lose financial liability protections and the guarantee of a quick decision.[8]

Initial Determination

The QIO ‘s decision regarding whether the hospice program’s discharge decision was appropriate is supposed to made within 72 hours after receipt of the beneficiary’s request for an expedited determination.[9] Prior to rendering a decision, the QIO must review the hospice medical records, provide the hospice provider an opportunity to explain why the discharge was appropriate, and solicit the views of the beneficiary.[10] The burden of proof rests with the provider regarding whether its decision to discharge the beneficiary was correct.[11] It is, of course, good that this is an expedited process. However, 72 hours is rarely enough time for a sick beneficiary to understand what exactly is being appealed (the provider’s allegation that the beneficiary is no longer terminally ill), secure copies of all pertinent medical records, and solicit the opinion and support of the attending physician.

It should be noted that at the beneficiary’s request, the hospice must furnish the beneficiary with a copy of, or access to, any documentation that it sends to the QIO, including records of any information provided by telephone. The provider can charge for the cost of duplicating documents. Unfortunately, beneficiaries are never told they have the right to review the documents. In the event that a beneficiary does request access to the medical records, the provider must accommodate the request by no later than close of business of the first day after the material is requested.[12] Even if beneficiaries are aware that they have a right to review their medical records, the cost of paying for duplicate copies might be prohibitive, or they may lack the ability (due to illness, caregiving responsibilities, or lack of transportation) to go to the provider’s office to review the medical records.

Coverage of hospice care continues until the date designated on the termination notice, unless the QIO reverses the provider’s discharge decision.[13] If the QIO finds that the beneficiary did not receive valid notice, coverage of provider services continues until 2 days after valid notice was received.[14]

In addition, the expedited appeal system is not synchronized with the standardized appeal system. The provider may honor the QIO’s decision, but still submit a bill to the Medicare Contractor who may later choose to deny the claim.

Reconsideration

If the QIO decides that the provider’s decision to terminate care because the beneficiary is no longer terminally ill was correct, the beneficiary then has a right to an expedited reconsideration.[15] The reconsideration request must be submitted to the Qualified Independent Contractor (QIC) in writing or by telephone no later than noon of the calendar day following notification by the QIO of its decision.[16] If this deadline is missed, the beneficiary can request a standard reconsideration.[17] This right, however, is essentially moot, as the beneficiary would be asking the QIC, after up to 60 days of no care, to rule that hospice care should not have been discontinued.[18] There is currently no evidence that the QIC would have the authority to order the hospice to resume care after such a long period of discontinued care.

Unless the beneficiary requests an extended period, the QIC must render a decision within 72 hours of receipt of the request for an expedited reconsideration, and any medical or other records needed for such reconsideration.[19] The beneficiary has the right to extend this period to up to 14 days for purposes of preparing an argument.[20] Upon the beneficiary’s request, the QIO must furnish the beneficiary with a copy of, or access to, any documentation that it sends to the QIC. The QIO may charge the beneficiary for the cost of duplicating documents and/or delivering the documents to the beneficiary. The QIO must accommodate the request no later than close of business of the first day after the material is requested.[21] Again as at the initial (QIO) level of review, beneficiaries have no way of knowing that they have this right and even it is known, the cost or effort involved in duplication may be prohibitive.

2. Standard Appeals

Making the system particularly confusing is the fact that hospice beneficiaries not only have a right to an expedited appeal, but also a right to standard appeals. Standard appeals review not whether care should have been terminated, but whether rendered and billed care should be paid for by Medicare. Standard appeals begin with an Advance Beneficiary Notice (ABN) from the provider to the beneficiary giving the provider’s opinion that continuing hospice care will not be covered by Medicare. This ABN serves the purpose of shifting financial liability from the provider to the beneficiary for ongoing care.[22] It also acts as a vehicle for the beneficiary to put ongoing care into controversy, or “demand bill.” It does this through its standardized construction which includes options to either request ongoing continuing care and have the care billed to Medicare, receiving ongoing care and not have the care billed to Medicare, or to discontinue care.[23] Unfortunately, providers frequently do not understand the distinction between the standardized notice for expedited appeals and the ABN. Consequently, they may only issue the standardized notice and not the ABN or, if they issue both, fail to explain to the beneficiary that there are two notices being rendered explaining different appeal rights.[24] Often, given the two notices, beneficiaries will exercise the right to an expedited determination but not the right to a standard appeal. This means, as was discussed earlier, that the question of the appropriateness of discharge will be the only issue reviewed. The issue of coverage of ongoing care will not be addressed.

If a beneficiary does exercise her right to a demand bill, the provider will bill the care as non-covered and the beneficiary will get a denial via a Medicare Summary Notice.[25] Prior to exercising this right, beneficiaries must understand that in the event that Medicare coverage is ultimately not granted, they will be financially responsible for the ongoing care. Successful appeals generally require the support of the beneficiary’s attending physician. Prior to starting a standard appeal, it is a very good idea to ask the beneficiary’s attending physician if she will write letters and potentially testify in support of Medicare coverage.

The right to an initial determination is followed by a right to a redetermination, a reconsideration, an ALJ hearing, a MAC review, and so long as there is enough in controversy, a right to judicial review.[26]

Medicare Advantage

Hospice is not covered under Part C – it is only covered under Part A.  Thus, Medicare Advantage plans do not currently offer/provide coverage (although beginning in 2021, CMS will test a VBID model).  However, MA plans may own, control, or have a financial interest in hospices that it refers enrollees to, but they are required to inform beneficiaries about the availability of hospices in general, not just the hospices it has an interest in, and beneficiaries have no obligation to receive coverage from a hospice aligned with the MA plan..[27] They can always select any Medicare-certified hospice provide.

Once the beneficiary elects the hospice benefit, the hospice will bill Medicare Part A (Medicare fee-for-service) for the beneficiary’s hospice care. In other words, traditional Medicare rather than the Medicare Advantage plan will be responsible for payment for the hospice care. Also of note, if the beneficiary receives care from providers for care unrelated to the terminal illness, those providers will also bill traditional Medicare (Part A or B) for the care in question. While the beneficiary is on hospice, he or she will be responsible for Part A and Part B cost-sharing. If the beneficiary revokes the hospice election or is discharged from hospice care, the Medicare Advantage organization will become responsible for the beneficiary’s health care costs on the first day of the month after the revocation or discharge.[28]

In its March 2014 “Report to Congress,” the Medicare Payment Advisory Commission (MedPAC) recommended that Congress include the Medicare hospice benefit in the Medicare Advantage benefits package beginning in 2016.[29]  According to the report, “The carve-out of hospice from MA fragments financial responsibility and accountability for care for MA enrollees who elect hospice.  Including hospice in the MA benefits package would give plans responsibility for the full continuum of care, which would promote integrated, coordinated care, consistent with the goals of the MA program.”[30]

Medicaid-Covered Hospice Services and Coordination of Benefits for People with Medicare & Medicaid

• Medicaid-covered hospice services. Hospice is an optional benefit for state Medicaid programs. Individuals who live in states that choose to provide a Medicaid hospice benefit may be able to obtain payment for hospice services even if coverage is not available under Medicare. (For example, if the individual does not have Medicare Part A.)
• Services for hospice care under Medicaid must be provided by a public agency or private organization that is primarily engaged in providing care to terminally ill individuals, that meets the Medicare conditions of participation for hospices, and that has a valid provider agreement. The Centers for Medicare & Medicaid Services (CMS) has taken the position that states may provide a more limited benefit under Medicaid than is available under Medicare. At a minimum, however, Medicaid hospice coverage must be available for at least 210 days. The services to be covered under Medicaid are essentially those described above for Medicare-covered hospice. Certification periods may be subdivided into two or more periods.
• Election of benefit. An individual electing the Medicaid hospice benefit must be eligible for Medicaid in the state in which she resides. Limitations on co-payments and deductibles would be reflected in the state’s Medicaid plan in accordance with Medicaid law.
• Medicare Hospice and “Regular” Medicaid Benefits. Hospice care is available for individuals who live in Medicaid-reimbursed nursing facilities. Under these circumstances, Medicare Part A will pay the hospice program for the palliative care. The state Medicaid agency will pay the hospice program a daily rate for the hospice patient’s room and board, the hospice program must then reimburse the nursing facility for the room and board. Room and board services include the performance of personal care services, assistance in the activities of daily living, socializing activities, administration of medications, maintaining the cleanliness of the resident’s room, and supervising and assisting in the use of durable medical equipment and prescribed therapies.
• Medicare covered hospice patients can simultaneously receive Medicaid covered personal care aide-only services. The hospice must coordinate its hospice aide and homemaker services with the Medicaid personal care benefit to ensure that the patient receives all the hospice aide and homemaker services he or she needs.

Articles and Updates

• CMS Suspends Launch of Program to Identify Poor-Quality Hospice Providers February 27, 2025
• New Resource | A Quick Guide to Hospice Coverage February 6, 2025
• Hospice CARE Act Introduced to Improve End-of-Life Care and Reduce Fraud  October 10, 2024
• Study: People with Dementia Receive Less Home Health and Hospice Care in Their Final Months February 23, 2023
• Gaps in Hospice Abuse and Neglect Reporting January 12, 2023
• NAHC and CMA Announce New Hospice Resource for Consumers December 12, 2022
• CMA Comments on CY 2022 HH Prospective Payment System & More August 5, 2021
• Recent Rules and Guidance Address Transparency in Hospice Coverage November 12, 2020
• Government Watchdog Agency Issues Report Highlighting “Significant Vulnerabilities” in Medicare’s Hospice Benefit July 11, 2019
• Inspector General Reports Concerns About Medicare Hospice Care August 9, 2018
• Observation Status Impedes Access to End-of-Life Skilled Nursing Facility Care November 3, 2016
• Medicare Hospice Care: Palliative vs. Curative July 26, 2016
• The Center for Medicare Advocacy Submits Comments on Proposed Rule for Hospice June 22, 2016
• National Healthcare Decisions Day: April 16, 2016 January 20, 2016
• Husband Reimbursed for Dying Wife’s Medication After Trying to Appeal Hospice Denial for Nearly Eight Years November 18, 2015
• Hospice Quick Reference November 17, 2015
• 26. Medicare Needs a Timely Way for Patients to Appeal Hospice Denials June 22, 2015
• Hospice Patients’ Rights Enhanced by New Medicare Rule October 2, 2014
• Hospice and Access to Medications Update: CMS Replacement Guidance July 24, 2014
• The Center Joins 26 Other Organizations in Calling for Suspension of Hospice and Part D Guidance June 12, 2014
• Tinkering With Hospice: The Medicare Care Choices Model April 24, 2014
• Hospice and Access to Medications – New CMS Guidance April 10, 2014
• Medicare Hospice Care: We Want Your Stories! January 9, 2014
• Appeal Rights Confirmed for Medicare Hospice Beneficiaries in Case Brought By Center for Medicare Advocacy July 16, 2012
• Hospice – Care When It’s Needed Most October 20, 2011
• New Hospice Face-to-Face Requirement: Help or Hindrance? April 28, 2011
• New Hospice Regulations are a Mixed Bag for Beneficiaries Seeking High Quality End of Life Care January 20, 2011
• Hospice News: the Good, the Bad, the Ugly October 20, 2009

• The Error in “There’s Nothing More We Can Do” – Dawn M. Gross, The New York Times, July 15, 2015

For older articles, please see our archive.

Notes:

[1]69 Fed. Reg. 69,252 (Nov 26, 2004).
[2]“…a termination of Medicare-covered services is a discharge of a beneficiary from a residential provider of services, or a complete cessation of coverage at the end of a course of treatment prescribed in a discrete increment, regardless of whether the beneficiary agrees that the services should end. A termination does not include a reduction in services. A termination also does not include the termination of one type of service by the provider if the beneficiary continues to receive other Medicare-covered services.” 42 C.F.R. §405.1200(b).
[3]42 C.F.R. §405.1200(b).
[4]42 C.F.R. §405.1200(b)(2).
[5]42 C.F.R. §405.1200(b)(3). Note that if a beneficiary refuses to sign the notice, the provider may annotate its notice to indicate the refusal, and the date of refusal is considered the date of receipt of the notice. 42 C.F.R. §405.1200(b)(4).
[6]42 C.F.R. §405.1200(b)(5).
[7]42 C.F.R. §405.1202(b).
[8]42 C.F.R. §405.1202(b)(4).
[9]42 C.F.R. §405.1202(e)(6) and (7).
[10]42 C.F.R. §405.1202(e)(3)(4) and (5).
[11]42 C.F.R. §405.1202(d).
[12]42 C.F.R. §405.1202(f)(3).
[13]42 C.F.R. §405.1202(c).
[14]42 C.F.R. §405.1202(c).
[15]42 C.F.R.§405.1204(a).
[16]42 C.F.R. §405.1204(b).
[17]42 C.F.R. §405.1204(b)(4).
[18]42 C.F.R. §405.970(a).
[19]42 C.F.R. §405.1204(c)(3).
[20]42 C.F.R. §405.1204(c)(6).
[21]42 C.F.R. §405.1204(d).
[22]42 U.S.C. § 1395pp, 42 C.F.R. § 411.404, Also see Medicare Claims Processing Manual, Pub. 100.04, Ch. 30, § 50.2.1, Effective: 03/03/08, Implementation: 03/01/09.
[23]Medicare Claims Processing Manual, Pub. 100-04 Ch. 30, § 50.3.1, Rev. 1, 10/01.03 and § 50.6.3, Rev.1587, Issued: 09/05/08, Effective: 03/03/08, Implementation: 03/01/09.
[24]Despite clear guidance from CMS and subsequent policy language, ALJ and the MAC frequently rule that the standardized notice for expedited appeal serves the purpose of shifting financial liability from the provider to the beneficiary. Thus there is no consequence to providers who fail to issue the ABN.
[25]42 C.F.R. § 405.921.
[26]42 C.F.R. §§ 405.940, 405.100, 405.1100, 405.1136.
[27] 42 C.F.R. § 422.320.
[28] 42 C.F.R. §§ 417.585 and 417.531. See also MCP Manual, Ch. 11, § 30.4 and MBP Manual, Ch. 9, § 20.4. As the beneficiary will not have a Medigap or equivalent policy, there may be significant out-of-pocket expense for non-hospice care.
[29] http://www.medpac.gov/documents/mar14_entirereport.pdf
[30] id.