The Complete Guide to Hospice Care

At some point, many of us will have to answer a crucial question — how do we want to spend the last few months of our lives? It’s a daunting and uncomfortable question, and hospice teams such as Amedisys are here to help guide you through what you or your loved one needs and deserves.

Setting goals for the end of life can provide a sense of purpose and direction in an emotionally challenging time. Goals help focus on what’s most important, allowing you to spend time on things that bring joy, fulfillment and closure instead of stress and panic.

As a caregiver, before you speak with a hospice representative, think about the following questions:

• Are we prepared to end curative treatment and focus on being as comfortable as possible?
• Where would Dad feel most comfortable in his final days?
• Is our family already stretched thin caring for Mom?
• Is there something I know my loved one wants to accomplish before they die?
• How can we best honor their legacy?

While you can’t control when death will come, hospice helps ensure their final days are spent on their terms, being cared for by compassionate clinicians, surrounded by family, in comfort wherever they call home.

Hospice care is supportive care with the primary goals of comfort and quality of life for patients with a terminal illness and a life expectancy of six months or less as certified by a physician. A team of clinicians, led by a physician, provides care to patients, families and caregivers. Many hospice companies, including Amedisys, also has professional staff available 24/7 to meet patient and caregiver needs.

Hospice is a holistic approach that treats the whole person, addressing the patient’s medical, emotional, psychosocial and spiritual needs. Every patient has a unique care plan suited to their needs and the needs of their family and support community. The care plan is based on what matters most to the patient for end-of-life care.

The purpose of hospice is to help patients live as well as possible for as long as possible. This is done by keeping them comfortable during end-of-life, maintaining the best quality of life, supporting caregivers and loved ones as they grieve, helping patients identify what is most important to them, and maximizing their ability to achieve their goals.

It’s also important to recognize what hospice isn’t, as there are many myths about hospice care that prevent people from getting what they need. Hospice is not giving up or even hastening death, it’s not just for cancer patients, it’s not a place and can be provided wherever the patient calls home, it’s not just for the final days and weeks of life and it can extend as needed (with a physician’s certification) to cover end-of-life care, so long as the patient remains hospice-eligible and continues electing it.

Hospice care is for anyone facing a terminal diagnosis at any stage of life who has decided to decline further aggressive treatment to cure their illness.

According to the latest data from the National Hospice and Palliative Care Organization (NHPCO), the most common primary diagnoses among hospice recipients are neurological conditions, circulatory and heart diseases, cancer and respiratory conditions.

When Should Hospice Care Be Considered?

If you’re unsure about when you should consider hospice care, here are the most common signs:

• Your doctor has told you they believe your life expectancy is six months or less.
• Your health is worsening rapidly.
• You don’t feel like eating or drinking.
• The number of hours you’re sleeping has increased.
• There have been noticeable behavior changes.
• You’re having trouble with self-care activities.
• Caretakers and loved ones are overwhelmed.

Unfortunately, hospice is still underutilized as a Medicare benefit. In 2020, less than half of Medicare decedents received hospice care at the time of death, according to the NHPCO.

How Do You Qualify for Hospice?

While qualifying for hospice care depends on the type of healthcare coverage you have, most options follow the same basic criteria, with Medicare being the most utilized option.

Patients must meet the following Medicare hospice eligibility criteria:

• Your doctor certifies that you have a terminal illness, with six months or less to live if the disease runs its normal course.
• You’re ready to stop treatments to cure your illness and instead focus on treatments that improve your comfort and quality of life.
• Your hospice provider is Medicare-approved.

The hospice benefit is among the most unique offerings in that it treats the whole person, addressing the patient’s medical, emotional, psychosocial and spiritual needs. Each patient’s plan differs depending on their needs and goals.

The following hospice care services are covered by Medicare and other insurance options if needed in the plan of care.

Hospice Care Services

The hospice team may recommend medications to help ensure that pain and other symptoms are well-managed. The goal is to help your loved one feel as comfortable and alert as possible.

The Four Levels of Hospice

All hospice agencies are required to provide four levels of hospice care to be certified by Medicare, offering all of the services listed above at every level. Which level of care a patient needs is based on their circumstances and the specific plan of care developed by the hospice team.

The four levels of hospice care include:

Routine Home Care

This is the most common, standard type of hospice care, providing patients with a comfortable and familiar environment wherever they call home.

Respite Care

This level of care places the patient in a facility for up to five days and five nights when caregivers need a break.

Continuous Home Care

Continuous care offers a more intensive type of medical care for short-term urgent healthcare needs or symptom crises that can be addressed at home.

General Inpatient Care

This level of care is provided when pain and symptoms related to the patient’s terminal illness cannot be feasibly managed at home.

In consultation with the physician, the hospice care team determines the appropriate level of care based on ongoing assessments, changes in the patient’s status and caregiver needs.

Once you’ve decided that hospice may be the answer for you or your loved one, what happens next? Here is the hospice care journey:

Inquiry/Referral

The process begins with either a direct inquiry to a hospice agency or through a doctor referral. Typically, the agency arranges for an informational meeting to explain hospice services, discuss concerns and goals of care.

Admission

Next, the agency arranges for a nurse visit to assess the patient’s individual needs for medical equipment, supplies, and medications and admit the person to hospice. They also develop an individualized plan of care in collaboration with the patient, family and doctor.

Continuing Care

Based on the plan of care developed, members of the hospice team make visits and provide care. They focus on quality of life and pain management, provide education and support to caregivers, and more. This plan of care can change as needed to meet the needs of the patient and their caregivers.

Final Days

When the end is near, hospice teams provide comforting support and help loved ones with appropriate notifications and final arrangements.

Grief Support

After your loved one passes, hospice provides bereavement care, grief support resources, and follow-up for at least 13 months.

One of the key benefits of hospice care is the support it provides to caregivers and families. Serving as a primary caregiver for a terminally ill loved one can be emotionally and physically exhausting, and hospice can alleviate some of these burdens and stressors. Here’s how hospice supports caregivers and families:

Emotional Support

Hospice providers offer emotional support to help families understand the end-of-life process and process associated grief.

Respite Care

This level of care is available to patients when caregivers need a break. The patient can be admitted to an inpatient facility for up to five days and five nights.

Education and Guidance

The full hospice team educates families on what to expect during the end-of-life process and can assist in making difficult decisions.

Practical Tasks

Having hospice aides in the home can alleviate some of the caregivers’ burden of assisting with personal care, meal preparation and light housekeeping.

Spiritual Support

Hospice chaplains help family members find comfort and peace by fulfiling their unique spiritual and religious needs.

Grief Support

Hospice providers understand the grieving process can be overwhelming and help families with bereavement support for up to 13 months following a loved one’s passing.

This support helps alleviate some of the stress family members undergo and allows them to focus on spending quality time with their loved one during their final stages of life.

Hospice care costs are covered by the Medicare hospice benefit, Medicaid, and most private insurance plans.

Medicare

The Medicare hospice benefit offers comprehensive coverage, including services to manage the terminal illness, medications for pain and symptom relief related to the illness, needed equipment and supplies as related to the terminal illness, and more.

Medicare does not pay for curative treatments or prescription drugs unrelated to the terminal diagnosis, medical care not prescribed by the hospice team, room and board at any in-patient skilled nursing facility or nursing home, emergency room transportation unless it is arranged by the hospice team, or care unrelated to the terminal illness.

Medicaid

Medicaid covers hospice care for those with low income and assets. The benefits are similar to those provided by Medicare but can vary by state. Medicaid can also be used alongside Medicare coverage. To learn more about your state’s offerings, contact your state Medicaid agency.

Private Insurance

Many private insurance companies also cover hospice care, often paying the full cost. Plans will vary, so be sure to contact your or your loved one’s insurance company to confirm the qualifications, which services are covered under the plan, whether there are any limits on hospice expenses, and what costs the patient is responsible for.

Other Options

Other benefits may be available to patients without insurance, including veteran’s benefits provided by the Veterans Administration, charity care, reverse mortgages, or personal savings accounts.

Hospice care can be received wherever you or your loved one call home. Research shows that more than half of patients receive hospice care at home, but, depending on the level of hospice care needed, it may also be available at a nursing home, long-term care facility, hospice center or a hospital.

Hospice Care at Home

When patients receive care at home, they are more likely to feel safe, comfortable and surrounded by the people that mean most to them. Their hospice team will make regular visits to ensure symptoms remain under control and help with tasks such as bathing and dressing.

Daily care is provided by a family member, friend, or caregiver, which is why the care plan is tailored to the patient and caregiver. But if an urgent need arises, the Amedisys on-call hospice team provides 24/7 support.

Hospice Care in a Nursing Home/Long-Term Care Facility

When receiving hospice in a nursing home, assisted living or skilled nursing facility, a hospice team visits and provides care just as they would with at-home care. The rest of the day-to-day duties are performed by facility staff. There are certain facilities that have their own hospice units with nursing staff to care for patients.

Nursing care or long-term care facilities are a good idea if patients are without family, friends, or caregivers who can provide day-to-day care, or they have complex needs.

Hospice Center

Hospice centers allow patients to live in a comfortable home-like environment where they receive short-term hospice care. A hospice center can benefit a patient who needs 24/7 care for a short period of time, who needs more help with symptom management, or who has no caregivers at home.

Hospice Care in the Hospital

The goal of hospice care in a hospital is to get symptoms under control so the patient can go back home or a facility. Additionally, hospital care can help with symptoms that cannot be managed at home or in a home.

Learn more about the ways that hospice can be provided.

Most aging adults would rather spend their remaining days at home surrounded by family and loved ones as opposed to a hospital or other facility. Hospice care honors that preference by allowing patients to live in the comfort of their own homes.

Hospice and palliative care provide pain and symptom relief for serious illnesses—but there are important differences to note.

Hospice is for patients in the later stages of their terminal illness who are expected to live for months rather than years. Hospice care is beneficial when treatment is no longer working, or for patients who don’t want to continue with their treatments to cure a terminal disease. Oftentimes, patients want to make the most of the time they have left, surrounded by their loved ones.

Palliative care provides relief from symptoms of a serious illness or side effects of treatment. Patients can receive palliative care when they’re first diagnosed with a serious illness; the goal is to help them feel better and improve their quality of life. With palliative care, patients may be able to feel better and may be able to continue doing daily activities.

Similarities Between Hospice and Palliative Care:

While there are a lot of differences between palliative and hospice, some similarities include:

• Compassionate care.
• Pain and symptom relief.
• Greater independence and control.
• Helping avoid unnecessary trips to the hospital.
• Comfort and quality of life as the primary goals.
• Physical, emotional, psychosocial and spiritual support.
• Treatment teams made up of professionals with specialized skills.

Differences Between Hospice and Palliative Care

The following are the most important differences between the two types of care:

A hospice conversation is for anyone with a serious illness who wants to explore all their care options, discuss their goals, and be in a position to make an informed choice. Discussing hospice does not mean the patient is actively dying, the patient needs to suspend all treatment and medications or that there’s any guarantee of how much time they have left.

Although there is no right time to start discussing hospice, there is a strategy that can make the hospice conversation easier. Follow these eight steps for a compassionate and effective discussion:

Patients and their families can choose the hospice provider that best meets their needs and allows them to meet their goals for the end of life. The best way to make an educated choice is to simply ask questions.

Here are several questions to ask when comparing hospice agencies:

Going through the process of understanding hospice care can be scary and overwhelming, and you likely still have questions. Here are a few additional common questions and answers:

How Often Will the Hospice Team Visit?

The hospice care team works with patients and caregivers to determine the frequency and type of hospice services needed. The number of in-home hospice service visits typically increases as the patient’s illness progresses and their needs increase.

Can I Keep My Doctor if I Choose Hospice Care?

Yes, you can keep your personal physician while receiving hospice care. Hospice reinforces the relationship between primary care physician and patient and considers this bond to be a high priority.

What’s the Hospice Admission Process Like?

Once you’ve expressed interest in learning more about hospice care, one of our team members will contact you to discuss your needs and help determine your eligibility. Next, we’ll contact your doctor, discuss your decision and receive authorization to begin providing home hospice services. Finally, you’ll sign forms that are similar to the ones that you would sign selecting hospice services.

How Long Can a Patient Receive Hospice?

Hospice care is for patients whose physician has certified they have six months or less to live. However, care can be continued if a doctor certifies that the patient continues to meet the hospice eligibility requirements.

What Happens if the Patient’s Condition Improves?

Sometimes, while on hospice services, a patient’s health improves. If a patient’s condition improves or the disease goes into remission so that they are no longer terminally ill, the patient will be discharged from hospice care and returned to regular medical treatment. Likewise, should the patient need to return to hospice in the future, these services can be resumed if the patient elects and meets eligibility.

Is There Any Special Equipment I Need Before Hospice Care Begins?

No. Your hospice care team will help you determine what you need and then assist you in obtaining any special equipment or making any changes in your home.

Can I Change My Mind About Hospice?

Yes. You can elect to end the service at any time.

Additional Hospice Resources

• Medicare.gov: A reliable source of information about Medicare hospice coverage, eligibility requirements, and services.
• Medicaid.gov: A full explanation of Medicaid’s hospice benefit.
• Hospice Compare: This resource allows you to compare quality and patient satisfaction scores among Medicare-certified hospice agencies.
• National Hospice and Palliative Care Organization: This is another tool to find high-quality hospice providers.
• National Institute on Aging (NIA): Part of the National Institutes of Health, the NIA is a trusted source of information on healthy aging, caregiving, and more.
• Centers for Disease Control and Prevention (CDC): The CDC provides research and statistics about hospice care.