Hospice

What is hospice care?

Hospice is specialized care you may receive when your prognosis is measured in months instead of years, and comfort is the primary goal. Hospice can help you prepare physically, emotionally and spiritually as you near the end of life. The aim of hospice is to allow people to maintain control over their lives, live with comfort and dignity, and feel supported as they prepare for death in their own way.

Hospice providers have expertise in managing symptoms, so you can feel comfortable and spend your final days in ways that are important to you. You and your family are surrounded with an extra layer of support from hospice nurses, social workers, chaplains, home health aides, physicians, volunteers and bereavement counselors.

What are the four levels of hospice care?

The four levels of hospice care are:

• Routine home care: Your family and/or loved ones care for you at home, and you receive regular visits from hospice care providers.
• General inpatient (GIP) care: You receive hospice care in a facility because you have pain or other symptoms that can’t be managed at home.
• Continuous home care: You receive more intensive, short-term support at home to manage a symptom crisis. This care is for people who qualify for GIP and wish to remain at home.
• Respite care: You receive short-term temporary hospice care in a facility to give your caregivers a rest.

Your hospice team will determine the most appropriate level of care for you. This level may change as your needs change.

Who can benefit from hospice care?

Healthcare providers use Medicare guidelines to determine eligibility for hospice care. According to Medicare, you’re eligible for hospice if your life expectancy is six months or less if your illness were to run its natural course. Providers recommend hospice when treatments to cure your condition are no longer beneficial, and providers don’t expect your condition to improve. Medicare, Medicaid and most private insurers cover most hospice care costs.

Many people who receive hospice care have chronic conditions that lead to gradual declines in health that eventually become untreatable, including:

• ALS.
• Alzheimer’s disease.
• Cancer.
• Dementia.
• Heart disease.
• Kidney disease.
• Parkinson’s disease.
• Lung disease.
• Others.

Members of hospice teams are experts at attending to the unique needs of people in the last months, weeks and days of life.

Who provides hospice care?

Hospice care includes a range of providers who care for your physical, emotional, social and spiritual well-being:

• Doctors: Hospice doctors work with you and your loved ones to develop a care plan that centers on your comfort and dignity at the end of life.
• Nurses: Hospice nurses visit one or more times a week to care for you and provide education and support about managing symptoms. Nurses coordinate care with other members of your hospice team. They’ll advise you and your caregivers on ways to support you and keep you comfortable.
• Home health aides: Home health aides visit one or more times a week to help with daily tasks, including bathing and personal care, and light housekeeping. Like nurses, home health aides are also educators. They can explain how you and your caregivers can best care for you when a home health aide or nurse isn’t there.
• Spiritual counselors: Spiritual counselors can help you process changes you experience as you near the end of life and support your transition to the last phase of life. You don’t have to identify with a specific religion or faith tradition to choose to work with a spiritual counselor.
• Social workers: Social workers provide emotional support, counseling and assistance with advance directives and financial concerns. They can also connect you with valuable resources like financial assistance, meal assistance and counseling services.

Depending on your needs, hospice care may include services like massage, art therapy and music therapy.

What does hospice care provide?

Hospice care provides resources and support for people at the end of life:

• Holistic end-of-life care: The focus of hospice is caring for you as a whole person and supporting your family. You’ll work closely with doctors and nurses who attend to your physical needs and with social workers and spiritual counselors who support your mental, emotional, social and spiritual health.
• Comfort medicine: You’ll receive medicine and other treatments to relieve your pain and ease other symptoms as needed. Your hospice team will partner with you to develop the best plan for you related to your medications and will reassess your needs over time as your condition changes. You’ll continue to receive medications that improve your comfort and quality of life.
• Medical equipment and supplies: You’ll receive equipment to make movement and bed rest easier — like electric hospital beds that can raise and help you sit upright — wheelchairs and walkers. You may receive equipment that enables you to breathe easier, like oxygen. You’ll also receive important supplies, like bedpans, bandages and syringes.
• Short-term care in a facility: Your care may briefly move to an inpatient setting if you develop needs that home care can’t fulfill.
• Support for caregivers: Hospice care extends to your primary caregivers, which includes your family members or friends who spend the most time with you. Hospice professionals work closely with caregivers to ensure that they know how to care for you. They also connect them with resources they need to take better care of themselves as they care for you. For instance, hospice care may include respite care, when you receive care in a facility for a short time while your primary caregivers rest and recharge. Hospice care includes bereavement support to help your loved ones as they grieve your death.

What doesn’t hospice care provide?

As you make end-of-life arrangements and consider the benefits of hospice care, it’s also important to understand what hospice doesn’t provide:

• Curative care: Hospice care is about keeping you comfortable and helping you have the best possible quality of life when curative treatments are no longer helping. It doesn’t provide treatment to cure your illness. If you change your mind and decide you want to pursue treatment for your disease, you can stop receiving hospice care. For instance, some people choose to resume treatment because a new medicine to cure or improve their illness becomes available.
• Room and board: Hospice care isn’t a substitute for the around-the-clock care you receive at a residential living facility, like a nursing home. You can receive hospice care anywhere you call home, including your own home, a nursing facility, a hospice care facility or an assisted living facility. Care in a facility may require you to pay out-of-pocket. Check with your insurance plan if you’re interested in moving into a facility but are unsure of the costs.
• Ongoing, around-the-clock care: The care you receive depends on various factors, like where you live, your condition and your insurance. Generally speaking, while hospice care professionals are on standby 24/7 to answer your medical questions, they don’t provide direct hands-on care around the clock over a long period. Instead, they’ll visit you regularly. Most people receiving hospice care at home also have family members or friends who care for them full-time.

How long can a person live in hospice?

Some people worry that if they live past six months, they’ll lose access to hospice benefits, but this isn’t the case. The reality is that no one knows how long another person will live. Six months is the timeline Medicare uses. Other insurers use Medicare’s timeline as the standard. Many people receive such good care in hospice that they live longer than initially expected.

Your hospice doctor will assess your condition on an ongoing basis. Hospice care can be extended beyond six months. If your condition improves, your doctor will discharge you from hospice. Your benefits depend on your unique needs.

What is the difference between hospice care and palliative care?

Palliative care focuses on improving quality of life for people with serious illnesses. You can receive palliative care at any stage of a serious illness alongside curative treatments. The goal is to relieve physical, emotional, social and spiritual difficulties that can occur when you have a serious illness.

Hospice focuses on comfort and providing an extra layer of support when the prognosis is measured in months instead of years. Hospice is beneficial when curative treatments are no longer helping or when a person chooses to no longer pursue treatment for their disease. With hospice, the primary goal is comfort.

Does receiving hospice care mean giving up?

Absolutely not. Receiving hospice care means that you’re advocating for living your life as fully and as comfortably as possible despite the realities of declining health. If your healthcare provider recommends hospice care, it’s an example of their commitment to your well-being.

Still, it’s important to remember that you have the final say about enrolling in hospice care or deciding to continue treatment. You always have the option to change your mind.

A note from Cleveland Clinic

Death is a part of life just as much as birth is. Death is something we’ll each experience one day. Having conversations with loved ones about what’s important to you if you develop a serious illness and how (and where and with whom) you’d like to spend the last months of your life can help you and your loved ones make decisions about your care. Talk to your healthcare provider about advance care planning. Having a clear idea of your wishes at the end of your life can allow you the freedom to live each day you’re in good health with greater peace of mind.