What is hospice care?

Hospice Care
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Hospice care: Overview

Hospice care provides medical treatment to relieve symptoms at the end of life. The goal is to keep you comfortable, not to try to cure you. Hospice care does not speed up or lengthen dying. It focuses on easing pain and other symptoms. Hospice caregivers want to enhance your quality of life.

Hospice care also offers emotional help and spiritual support when you are dying. It also helps family members care for someone who is dying.

Hospice care can help you review your life, say important things to family and friends, and explore spiritual issues. Hospice also helps your family and friends grieve.

You can use hospice care if your illness cannot be cured and doctors believe you have no more than 6 months to live. You do not need to be confined to a bed or in a hospital to benefit from this type of care.

The hospice team includes doctors, nurses, counselors, therapists, social workers, pastors, home health aides, and trained volunteers. You can get care in your own home or in a hospice center. Some hospice workers also go to nursing homes or hospitals.

Hospice care

Hospice care provides medical services, emotional support, and spiritual resources for people who are in the late stages of an incurable illness, such as cancer or Alzheimer's disease. Hospice care also helps family members manage the practical details and emotional challenges of caring for someone who is dying.

Hospice services are provided by a team of caregivers that may include health professionals, volunteers, and spiritual advisors. Services typically include:

  • Basic medical care with a focus on pain and symptom control.
  • Access to a member of the hospice team 24 hours a day, 7 days a week.
  • Medical supplies and equipment, as needed.
  • Counseling and social support. These services are available, as needed, for both the person in hospice care and for anyone in that person's family.
  • Guidance with the difficult, but normal, issues of life completion and closure.
  • A break (respite care) for caregivers, family, and others who regularly care for the person.
  • Volunteer support, such as preparing meals or running errands.

Who provides hospice care?

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.

What can you do to prepare for hospice 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.

Choosing a hospice program

There are many things to consider as you choose a hospice program. This list can help you ask the right questions when you meet with hospice programs.

  • Ask where services are provided.

    Are they provided in:

    • Your home?
    • A special inpatient hospice unit?
    • A facility (hospital or nursing home) where you are already a patient?
  • Ask what services are provided.

    Does the program have:

    • One or more doctors who can make home, hospital, or nursing home visits?
    • Spiritual or religious counseling or advisers?
    • Respiratory, occupational, and physical therapists?
    • Social workers?
    • Home health aides?
    • Shopping and errand services?
    • Meal preparation and nutritional counseling?
    • Cleaning and household chore services?
    • Respite services if your primary caregiver becomes ill or needs a break?
    • Prescription medicines and medical supplies and equipment?
    • Interpreters or other special services related to your culture, ethnicity, or lifestyle?
  • Ask what is the plan of care.

    Does the hospice program develop a care plan with you and your family?

    The care plan should include specific duties, who will perform them and how often, and the name and phone number of the supervisor. A good program will develop a care plan by providing a health professional who will:

    • Talk with you and your family.
    • Talk with your doctor or other health professionals.
    • Write down the care plan and give copies to everyone who will be involved in your care.
  • Ask who provides care.

    Is it:

    • Family members?
    • Hospice staff?
    • Your doctor?
  • Identify families who have used this program.

    If possible, talk with the families. Ask about their experience. Would they recommend the program to others?

After your visit, ask yourself:

  • Does this program provide the services I want?
  • Is this program covered by my insurance?

What is hospice care?

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.

What makes you eligible for hospice care?

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.

What are the goals of hospice care?

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.

How do you arrange for hospice care?

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.

Deciding about hospice care: Overview

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.

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