Hospice focuses on caring for the patient's quality of life, rather than curing what ails them, allowing the patient to pass away with dignity and comfort. This type of care is available in many different forms and is covered under Medicare, Medicaid, and most private insurance plans. In this guide, you'll find information about hospice care, funding options, and how to find the right hospice care provider for your needs.
A short history of hospice care
The term, hospice, was first used by Dame Cicely Saunders a physician who started giving care to the terminally ill in 1948 and created the first modern hospice facility, St. Christopher’s Hospice. From there, hospice care grew with the first states-based hospice being founded in Branford, Connecticut in 1974.
The Health Care Financing Administration (or HCFA) launched cost-effectiveness assessment programs at 26 American hospice facilities in 1979. Just a few years later, Congress included a hospice care provision for Medicare within the Tax Equity and Fiscal Responsibility Act of 1982. But it wasn't until 1993 that hospice officially became a guaranteed national benefit.
Throughout many years of further research and changes made to the hospice care part of national care, in 2014, NHPCO celebrated 40 years of hospice care in 2016. And today, hospice is still a priority for end-of-life care.
Who should consider hospice?
According to Medicare guidelines, hospice care is for individuals with a life expectancy of 6 months or less, depending on the course of the illness or injury. However, exceptions can be given for those who live longer than 6 months if the medical director of the hospice care you choose will recertify the terminal illness. For hospice care, age does not matter, the only requirement is terminal illness or injury.
Hospice patients most frequently have the following illnesses:
- Stroke and Coma
- Pulmonary Disease
- Liver Disease
- Dementia and Alzheimer’s disease
- Adult Failure to Thrive
However, there are other diagnoses given the physician’s certification for the patient and their specific needs and health status.
Hospice care can also be given to patients no matter where they live. If the patient resides in a nursing home or assisted living facility, hospice care can still be enacted.
If the patient is diagnosed with a terminal illness or injury, the first requirement is already met. However, other requirements will need to be met, depending on Medicare, Medicaid or private insurance coverage and the state you reside in.
In order to be eligible for Hospice through Medicare, the patient must be eligible for Medicare Part A and have a certifiable diagnosis by a physician. The patient must also have a prognosis of 6 months or less to live if the disease is to continue its normal course. You can see these requirements here.
If these requirements are met, Medicare will allow the patient a one time visit with an employee or medical director of the hospice facility for an interview for hospice care. This interview will discuss pain management needs, counseling and any advanced care planning that must be done.
This interview can only be given to patients with a terminal diagnosis, who have not made a hospice election as of yet and those who have not had previous pre-election services. Other requirements may be needed depending on the state of residence for the patient.
Medicaid can differ depending on the state of residence for the patient. It is an “optional state plan” that includes all hospice care services for terminally ill patients. The services included in this plan may include:
- Medical social services
- Physician services
- Inpatient care
- Appliances and supplies
- Aides and homemaker services
According to Medicaid, to be eligible if the state has elected the plan, the patient must elect the benefit by filing an “election statement” with the hospice of their choice. This will waive the benefits of treatment or curing of the illness. The hospice provider itself must obtain certification from the patient’s physician that the patient is terminally ill with all related documentation. Prior to services being rendered, a plan of care must be completed.
Medicaid payments are then handled by Medicaid depending on the annually published hospice care rates that are effective from October 1 through September 30 of each year. As of 2010, patients under the age of 21 may elect both treatment and hospice care without waiving.
Long-term care insurance
Individuals with private long-term care insurance that are not eligible for Medicare or Medicaid can also receive hospice care, depending on their plan details. The plan itself will have coverage predetermined for these patients with payments outlined within their elected benefits. With private insurance companies, the eligibility requirements will differ from one to another. However, the major companies will agree that hospice should only be given to patients that are deemed terminally ill by a physician with a certification of care performed. It is best to check with the patient’s insurance company for the requirements per the health insurance provider.
If the patient has not elected private insurance and is not eligible for Medicare or Medicaid, the eligibility requirements will be set by the hospice care facility where they will receive care. If no insurance coverage is available, the facility will determine the need for hospice and what services will be required for the patient’s care. Based on a sliding scale, some patients may be eligible for hospice free of charge. It is best to check with hospice care facilities in the area to determine the best plan of action for the patient.
It is important to note that a physician certification will require documents and forms filled out by the patient’s physician. These requirements will be determined by the state the patient resides in as well as the hospice care facility that is elected. It is best to speak with the physician prior to hospice election and certification.
Types of hospice care
There are many different types of hospice care available for terminally ill patients and their families. The NHPCO uses four categories to distinguish different kinds of hospice care: routine hospice care, routine inpatient care, home care, and inpatient respite care. All four of these types of hospice care are eligible for use under Medicare and Medicaid and various private insurance companies.
Routine hospice care
Routine hospice care refers to the basic, most common level of hospice care. Care is provided at the patient’s residence, whether at home, a skilled-nursing facility or elsewhere. Routine hospice care includes all facets of hospice, from nursing care and pain management to counseling and resources for families.
General inpatient care
This care is provided in an inpatient setting when deemed medically necessary. These patients may require pain management or other necessary interventions that are not feasible at any other location. When symptoms cannot be managed by other means, a patient may be eligible for inpatient care services. The locations eligible for inpatient care include Medicare-certified hospitals, a hospice inpatient facility, or another skilled nursing facility with 24-hour care. Locations will vary by state and location of hospice care for the patient.
Continuous home care
If the patient elects to remain at home, continuous home care can be provided from 8 to 24 hours a day to help maintain symptoms and pain. These services are completed by a hospice nurse and can be supplemented with a hospice aide or caregiver. Continuous home care is a good option for patients with many symptoms and moderate levels of pain to have access to care throughout the day, especially during a symptom-heavy day.
Inpatient respite care
Provided for a maximum of five days, inpatient respite care is given to relieve the patient’s primary caregiver. This type of care can be provided in a 24-hour facility such as a hospital, hospice facility or long-term care facility. This type of care is meant to return the patient back home when the caregiver has returned to full-time care.
According to the NHPCO, hospice patients can be admitted at any level of care, yet the progression of their illness or injury can change that care level at any time. The hospice facility will transfer the patient when applicable.
According to the American Hospice Foundation, services that are provided to hospice patients depend on what the patient and the family require. The services can be adjusted as the patient’s health changes, making hospice a flexible care option. For those covered by Medicare or Medicaid, some of the services include:
- Nursing services during the day or 24-hour nursing services, depending on the needs of the individual patient
- Durable Medical Equipment, like a walker or wheelchair
- Medical supplies (including disposable supplies like as catheters and bandages)
- Pain controlling drugs
- Home health aides or homemaker services
- PT/OT services
- Speech therapy services
- Social worker and counseling services
- Emotional and spiritual counseling for patient and family
- Respite care
There are services that Medicare or Medicaid will not provide for hospice patients. These services include:
- Treatment to cure the patient’s illness and/or conditions
- Prescription drugs (except for those used for pain relief and control)
- Care from any provider that is not set up by the hospice care team
- Room and board (unless the patient needs short-term inpatient care or respite care that they arrange)
- Care as a hospital outpatient, care as a hospital inpatient or ambulance transportation
For patients covered by private health insurance, the services provided will depend on the plan benefits listed under the patient’s specific plan. Your hospice care team will be able to evaluate the patient’s needs and provide more information regarding coverage, benefits, and services that are in line with the private insurance plan.
Increasing care needs
If the patient requires a higher level of care during their hospice care, neither Medicare or Medicaid will cover inpatient services under the Hospice Benefit. It is best to see if the patient will have coverage for these types of services other than Medicare or Medicaid such as private health insurance or supplemental insurance policies. However, if the patient does remain in their own residence, skilled-nursing services and other in-home services are covered and can add a higher level of care depending on the needs of the patient. The hospice care team will consult with the patient and family to decide on a care plan that will fit the needs of the patient while remaining within reach for the finances.
The cost of hospice varies depending on your insurance coverage, whether Medicare, Medicaid or private health insurance.
- Hospice is paid for by the Medicare Hospice Benefit.
- Hospice is covered with a $0 cost for the patient and family.
- Prescription drugs may require $5 co-pays, depending on the drug. If your drug isn’t covered by the hospice benefit, it could be covered under Part D.
- Inpatient or respite care may also leave you paying 5% of the Medicare-approved amount.
- Medicare does not cover room and board if the hospice care is done in the patient’s home or another residence such as a skilled-nursing facility.
Medicaid in 48 states
- Hospice is paid for by the Medicaid Hospice Benefit.
- Payment for hospice services is made to the hospice provider using Medicaid hospice rates, effective from October 1 through September 30 of each year.
- Except for physician services, reimbursement is made for hospice care at these predetermined rates for each day that the patient receives care under the four categories: routine home care, continuous home care, inpatient respite care and general inpatient care.
- Each year, the Medicaid hospice rates of reimbursement will change for hospice care facilities.
For Medicaid coverage, the patient should check the state they reside in for full benefit information.
Most private insurances will model their coverage based on federal hospice programs. However, other private insurances will vary in the amount they will pay. The patient’s insurance company should be contacted to better understand the costs associated with hospice and the care provided. This will help to understand any out of pocket expenses that can be expected as well as what services are covered throughout the entirety of care.
Selecting a hospice care facility
Selecting a hospice care facility is crucial to the patient’s quality of care. With so many options available, it can seem difficult to choose what is best. Here are some items to consider when selecting a hospice care facility.
What type of care will the patient require?
Not all hospice care providers will provide all types of patient care. The patient’s needs and level of care should be determined prior to
Is the hospice care certified by Medicare?
If the patient has Medicare coverage, the hospice care must be certified by Medicare to be eligible for benefits. Most hospice care facilities are Medicare-certified, however, it is important to know for sure when selecting care.
Is the hospice accredited?
Although hospices are not required to be accredited, it can reflect the type of care the patient will receive while in its care. Accreditations are given by several national organizations that look for high-quality care with high standards.
Is in-home care provided?
In-home care is the most popular choice for patients entering hospice care. If the hospice does not offer home-care, it may not be the best choice. It is also important to ask if the facility offers home visits for a crisis during the night or over the weekend. 24 hours care, 7 days a week is important for this time.
Are hospice physicians and staff certified in hospice care?
There are several certifications for physicians, clinicians, and staff that can be achieved in the realm of hospice and palliative care, based on knowledge and experience.
How long has the hospice facility been in operation?
Successful and experienced hospice care facilities offer more service options for the patient and their family. Length of operation can also speak to the quality of care and experience in the field.
See more questions to ask and consider using this worksheet by NHPCO, here.
Selecting hospice care will also depend on the patient’s coverage by Medicare, Medicaid or private insurance. Private insurances will differ in what they allow depending on the benefits available. Under the Medicare and Medicaid Hospice Benefit, only short-term inpatient hospice care is covered. It is important to consider these details when selecting.
What amenities are important?
When choosing hospice care, there are certain amenities that are important for end-of-life care. With in-home care, important amenities include:
- Homemaking duties such as cooking and cleaning
- Personal assistance with bathing and dressing
- Outside activity and exercise
- Access to health resources
- Transportation if needed
Within a hospice care facility, there are amenities that are important to the patient and the patient’s family for visiting and family care. Some of these amenities include:
- Dining and visiting areas
- Children activities, daycare
- Spiritual care center
- Open areas meant for groups for families
The amenities the patient will require will depend on the care they require. Although end-of-life care is a delicate process, amenities can help the patient feel more at home and at ease, during this transition period.
Questions to ask a hospice care provider
The chosen hospice care facility will need to fit the patient’s needed level of care as well as the families’. The facility may offer a tour, or your hospice caregiver may ask questions during the Medicare and Medicaid interview. According to the American Hospice Association, there are various questions to ask a potential hospice care facility including:
- What do others say about this hospice? This question can be a lead towards gathering references for the hospice from others who have entered into care. Asking the patient’s physician for a recommendation is also a good place to start.
- Is the hospice accredited or state-licensed if required? The website for the patient’s state can be checked for licensure requirements for hospice care for clarification.
- Can the hospice meet the patient’s needs? This is a great interview question to learn more about the hospice’s options and to see if the hospice understands the level of care the patient needs.
- Does the hospice offer extra services? This includes anything other than what the patient will directly receive from the plan of care determined.
- What are the options for inpatient care? Does the hospice have beds leased in a local hospital or do they have their own? This is important to know if a crisis happens at the patient’s home or location.
- How is quality measured at this facility? The patient only deserves high-quality hospice care.
- Are any bereavement services offered? This can include counseling, support groups, and spiritual care.
Hospice and end of life care is a crucial part of a patient’s health and the family’s wellbeing. For any questions or further information regarding Medicare or Medicaid, you can follow these links: Medicare and Medicaid. For more resources on in-home care and special services, you can visit our website, here. It is always best practice to contact the patient’s insurance provider for any questions regarding benefits and eligibility.
Proximity of care is very important when considering options
Research care options that are nearby when thinking about the next step for your loved ones.
Leona J. Werezak RN, BSN, MN is a registered nurse and adjunct nursing professor. She has 24 years experience working in a variety of healthcare settings including such remote locations as the Arctic Circle. Her research in early stage dementia was published in the Canadian Journal of Nursing Research and re-published in their 40th anniversary issue which showcased exceptional research published since the journal began. Her work in dementia care has also been published in the Journal of Gerontological Nursing. She currently teaches surgical nursing care on a thoracic/vascular unit to baccalaureate nursing students. Her clinical work with nursing students involves extensive work with older adults who have multiple chronic health conditions.