Hospice Care Services
During a serious illness, you or your loved ones may talk with your doctor and decide that the treatments that are meant to cure or slow the illness are no longer working. Or you may decide to stop those treatments for other reasons. When that happens and you are nearing the end of life, your doctor can refer you to hospice care, also known as end-of-life care.
Hospice care can make sense when you're no longer trying to extend your life, but you want relief from pain and other symptoms, along with emotional, practical, and spiritual support for the last phase of life.
Some people might think using hospice means they're giving up. Others may worry that they won’t get the medical care they need. But hospice care simply shifts the focus of medical care and other supports to improve the quality of your life for as long as it lasts. So, you might spend much less time and energy on treatments and tests and more time and energy on whatever matters most to you.
Your team may include a doctor, nurse, social worker, counselor, chaplain (if you’re religious), home health aide, and trained volunteers. They work together to meet your needs.
Hospice is for family members, too. It offers counseling and help with practical things such as house cleaning and shopping.
Hospice vs. Palliative Care
Hospice care is a type of palliative care -- which is care that focuses on comfort and quality of life for someone with a serious illness. All palliative care aims to match your care with your preferences for how to live your life. It provides medical, social, emotional, and practical support to help you feel better in body and mind.
But there are differences between hospice and other forms of palliative care.
Palliative care
It's possible to get palliative care at any stage of an illness. You can get palliative care while still trying to cure your illness. For example, your palliative care team might help you manage side effects so you can complete chemotherapy treatments for cancer. Or you might get counseling to manage the stress of dealing with your condition.
Palliative care often involves working with a palliative care doctor who coordinates with your regular doctors and other professionals, such as social workers and nutritionists.
Ideally, palliative care can last as long as you need it, but insurance coverage can vary.
Hospice care
Hospice is the specific kind of palliative care you get when the end of life is likely near -- usually less than 6 months away -- and you are no longer trying to slow down or cure your illness. It also involves a team, including doctors and others who specialize in end-of-life care.
Going into hospice care doesn't mean you have to stop all medical care except for symptom relief. For example, if you stop taking chemotherapy drugs to try to cure your cancer, you still might keep taking pills for your blood pressure.
Hospice vs. Comfort Care
The term comfort care is sometimes used to refer to hospice care — because a major focus is on relieving pain and other kinds of discomfort.
But comfort care is only part of hospice care, which includes a broader range of services for patients and their families.
If a doctor talks with you about shifting to comfort care, be sure to find out exactly what they mean and whether they are recommending hospice care. That can affect not only the care you get but also how insurers cover that care.
Stages of Hospice Care
Some hospice providers describe the process of going through hospice care in three stages that include these steps.
Hospice evaluation
After you, your doctor, or another care team member contacts a hospice provider, they'll do an evaluation to see if the services are a good fit for you. Usually, you need a doctor to say that you have 6 months or less to live if your illness takes a typical course. And you agree that you are no longer seeking a cure for your illness.
If you are eligible, the team will meet with you and your family to discuss your needs and make up a care plan. This stage will include a full evaluation of your situation and your preferences. It's a key time to ask questions about the plan.
The plan should include details such as what medications, supplies, and equipment are needed, and how often the doctor, nurse, medical social worker, home health aide, chaplain, volunteers, or other team members will visit you and your family.
Active hospice care
Once services start, the team will focus on carrying out the plan set in place during the evaluation. Some providers refer to this stage as comfort care.
End-of-life care
Whether you are in hospice for a few days, weeks, or months, your team will continue to evaluate your condition and needs. As you move closer to death, the care plan will adjust to make sure you stay as comfortable as possible and that you and your family get the emotional support you need.
After your death, hospice care will offer bereavement counseling to your family.
When Can I Join Hospice Care?
Under guidelines used by Medicare and most other insurers, you may enter a program if your doctor says that you have a terminal illness and that death can be expected in 6 months or less. You can stay in hospice beyond that time if your doctor and the team decide you still have only a short time to live.
Hospice isn't always a permanent choice.
For example, if your kidneys are failing, you might choose the hospice program rather than continuing with dialysis. But you can still change your mind, stop hospice care, and start back on treatments. Other people may get better unexpectedly and quit the service with the option of returning later.
Levels of Hospice Care
Under Medicare guidelines, all hospice providers must offer four levels of care, two of which happen at home. The four levels are:
Routine home care. This is the most common level of hospice care and includes nursing and home health aide services. But most of the care is handled by family caregivers or friends.
Continuous home care. This is when a patient needs continuous nursing care at home during a time of crisis.
General inpatient care. This is short-term care in a hospital or nursing home during times when pain and symptoms can’t be managed elsewhere.
Respite care. This is short-term care in a facility when the patient’s caregiver needs a break.
Most people choose to stay at home during hospice care. One advantage is that friends and family can visit freely. A relative or friend usually serves as the primary caregiver.
You may also get care at hospice centers, hospitals, nursing homes, and other long-term care places.
You might want to think about these questions when deciding whether to stay at home:
- Just how ill is the person needing care and how do they feel?
- Can any pain be managed away from a hospital or nursing home?
- Is the main caregiver physically and emotionally able to provide what’s needed from home?
- If you are a caregiver and work, can you afford to cut back on your hours at work or leave your job?
Your decision is personal, and each situation is different. But how you answer questions such as these will help you decide where to go.
What Happens Once I’m in Hospice?
Your team will follow the plan you made together. They will check on you regularly, and a member of the team will be on call 24 hours a day, 7 days a week.
During this time, whether you are at home or a in health care facility, you should get medication to control your pain and other symptoms. The team should also provide equipment such as hospital beds, wheelchairs, walkers, and supplies such as oxygen, bandages, and catheters.
A doctor -- either your own or one connected with a program -- will give medical care. Nurses will also check on you. Aides will assist with things such as bathing, dressing, cleaning, and cooking.
Other services that are available, if needed or wanted, include:
- Chaplain and spiritual services for you and your loved ones
- Social work and counseling
- Advice on eating
- Physical and speech therapy
Who Pays for Hospice Care at Home?
If you have Medicare coverage -- under traditional Medicare or a Medicare Advantage plan -- your hospice expenses will be covered by Medicare. That's true whether you get care at home or elsewhere. If you don't have Medicare, your care may be covered by your state's Medicaid program or a private insurer. Veterans’ Administration (VA) benefits also cover hospice care.
Hospice coverage under Medicare, the most common payer, includes hospice doctors' fees and all other services from a Medicare-approved hospice provider. But you still can face some costs such as:
- Prescription drug copays of up to $5 for each drug used for pain and symptom control
- 5% of the Medicare-approved amount for inpatient respite care
- Your usual copayments and deductibles for the treatment of health problems that aren't part of your terminal illness
- Room and board, if you get hospice care while living at a nursing home or other facility
If you don't have insurance or your insurer doesn't fully cover hospice, some hospice agencies will offer care for free or at a reduced cost, based on your ability to pay. Most hospice organizations have financial support staff to help you figure out your options.
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How Do I Find a Hospice Care Program?
Start by asking doctors, nurses, social workers, and friends for recommendations. On the Internet, you can go to the website of the National Hospice and Palliative Care Organization. You can call the NHPCO at 800-658-8898. For languages other than English, call 877-658-8896.
These are some questions that Medicare suggests you ask about any hospice program you are considering:
- Does the hospice accept my insurance?
- What services and treatments will be covered?
- How long has the hospice been serving patients?
- Where are services provided?
- Will the hospice provide a hospital bed and other medical equipment I might need?
- Will I have the same hospice nurse throughout my care?
- What other members of the team might I see, and how often?
- How many patients are assigned to each hospice nurse?
- When I call with an urgent need, how long will it take for someone to respond?
- How will the team manage my pain or other symptoms?
- Can I take my current medications?
- What if can't control my symptoms at home? Can I go to the hospital?
- How will the team keep me and my family informed about my condition?
- Will my family and I be involved in care decisions?
- How do I communicate any questions or concerns?
- Can I still see my regular doctor if I am in hospice? If so, how will the hospice team coordinate care with my doctor?
- Can my caregivers talk with other caregivers about their experiences with the hospice program?
- What happens if my caregivers can't care for me at home or need a break?
- How will the team help with the grieving process?
Takeaways
If you choose hospice care near the end of your life, it doesn't mean that you are giving up on all medical care. Instead, it shifts the focus of care to your comfort and well-being. Hospice also helps support your family or other caregivers through the end of your life and the grieving process. When choosing a program, be sure to ask lots of questions and to speak up about what matters most to you and your loved ones.
Hospice Care FAQs
How long can hospice last?
A common misunderstanding is that hospice care can only last 6 months. But under Medicare guidelines, there's no limit on how long hospice care can last, as long as your doctor says you remain terminally ill. If you improve so much that you are no longer likely to die within 6 months, your doctor can discharge you from hospice care. That flexibility is there because it's often hard for doctors to predict how long someone will live.
How do you put someone in hospice?
The patient, their doctor, or a caregiver may make the first contact with a hospice provider. But it's a good idea to discuss the idea with your doctor first. Doctors are sometimes reluctant to bring up hospice if patients and families don't ask about it -- which can result in people missing out on months or weeks of beneficial care and support. If you decide to go ahead, you'll need your doctor's input to qualify for services.
What is the last step before hospice?
There's no single trigger for hospice care. Many people get hospice care only in the final days of their lives, despite its availability at earlier stages. The process starts when a doctor certifies the patient likely has less than 6 months to live. The last formal step before hospice is putting together a hospice plan of care (POC).
