What is hospice care?

Here's how palliative and hospice care are different.

Kinds of care provided

• Palliative care: This is treatment to help you feel better in body, mind, and spirit while doctors also treat your illness. It can include care such as pain relief, counseling, and nutrition advice. It can also include helping you and those close to you to:
  • Understand your illness better.
  • Talk more openly about your feelings.
  • Decide what treatment you want or don't want.
  • Communicate better with your doctors, nurses, and each other.
• Hospice care: This is a type of palliative care. But it's for people who are near the end of life. The goal is to help you feel better and get the most out of the time you have left. But you no longer get treatment to try to cure your illness.

When care happens

• Palliative care: This care can happen at any time during a serious illness. You don't have to be near death to get this care.
• Hospice care: In most cases, you can choose hospice care when your doctor believes that you have no more than about 6 months to live.

Where care is provided

• Palliative care: This type of care can be provided wherever you're being treated for your illness. You can get it in the hospital, at your doctor's office, in a nursing home, and even in your home.
• Hospice care: Most hospice care is done in the place the person calls "home." This is often the person's home. But it could also be a place like a nursing home or retirement center. And hospice care may also be given in hospice centers, hospitals, or other places.

Care providers

• Palliative care: There are doctors and nurses who specialize in this field. But your own doctor may also provide some of this care. And there are many other types of experts who may help you, like social workers, counselors, therapists, and nutrition experts.
• Hospice care: In hospitals, hospice centers, and other facilities, care is provided by doctors, nurses, and others who specialize in hospice care. In the home, a family member is usually the main caregiver. But the family member gets help from care experts who are on call 24 hours a day.

Paying for care

• Palliative care: Most health insurance covers palliative care. But the amount of coverage may vary.
• Hospice care: Health insurance usually covers hospice care. It's also covered by Medicare and Medicaid. You are eligible for hospice care regardless of your ability to pay.

A hospice team will manage your care. Most of the time, hospice care is provided in your home. A family member or friend may look after you much of the time. The hospice team will work with them to give you the best care possible. Someone from your hospice team will likely visit you for an hour or so once a week or more.

A hospice team usually includes:

• A doctor.
• Nurses.
• Social workers.
• Hospice and palliative medicine care specialists.
• Nursing assistants.
• Trained volunteers.

Some hospice teams also include:

• Pharmacists.
• Respiratory therapists.
• Psychologists.
• Psychiatrists.
• Dietitians.
• Music therapists.
• Physical therapists.
• Occupational therapists.
• Spiritual advisers.

The hospice team will adjust your care plan as your situation and needs change.

Some people worry about losing touch with their regular, trusted doctor. But your regular doctor can work with others on your team to stay involved in your care.

• Prepare a list of advance directives. These are instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.
• Find out if your health insurance covers hospice care.
• Find hospice programs in your area. People who can help include your doctor, your state health department, and your insurance company.
• Decide what kinds of hospice services you want. It helps to know what you want before you enter a hospice program.
• Think about some questions when preparing for hospice care.
  • Who do you want to make decisions about your medical care if you are not able to? Many people choose their partner, child, or friend.
  • What are you most afraid of that might happen? You might be afraid of having pain or losing your independence. Let your hospice team know your fears. The team can help you.
  • Where would you prefer to die? Choices include your home, a hospital, or a nursing home.
  • Do you want to donate organs when you die? Make sure that your family clearly understands this.
  • Do you want any religious rites or practices to be done before you die? Let your hospice team know what you want.

Hospice is for people who are near the end of their life. It provides treatment to relieve symptoms. The goal is to keep you comfortable, not to try to cure your disease. Hospice care does not speed up or lengthen dying. It focuses on easing pain and other symptoms.

Hospice care also offers emotional help and spiritual support when you are dying. And it helps caregivers manage the practical details and emotional challenges of caring for someone who is dying.

Some people think that starting hospice is a last resort, that it means they're giving up on life. Some think that hospice means a lower level of medical care. But hospice is simply a type of care that focuses on the quality of your life instead of on continuing with treatment to prolong your life.

Usually, two things must be true for you to be eligible for hospice care. First, your illness can't be cured. This is called a terminal illness. Second, your doctor expects that you will live 6 months or less if your illness runs its normal course.

The goal of hospice is to keep you as comfortable as possible during the time you have left. You will get medical care to provide comfort. Hospice workers will help your caregivers learn how to care for you.

You will need to fill out some forms for hospice care. These include:

• An advance directive. This usually includes:
  • A medical power of attorney.
  • A living will.
  These forms may be called something else in your state.
• Insurance forms. Hospice services are covered by Medicare and by Medicaid in most states. They are also covered by many private insurance plans. Check with your employer or your health insurance plan about the services your plan covers. Many hospices will also help people who can't pay.
• Other legal documents related to finances, property, and other matters.

After you start the hospice program, you will want to get all billing arrangements in writing. This includes costs and payment arrangements. Be sure to keep a copy.

Be sure that your family knows:

• What services you are to receive from the program.
• What the schedule is.
• The names and phone numbers of important contact people at the hospice.

There are many reasons why you might choose hospice care. You might choose it if treatment for your disease has become more of a burden than a benefit. Or you might choose hospice if you want to focus on comfort rather than medical treatments.