Finding a Hospice Program

Finding the hospice provider or program that best meets your needs may take some time and searching, but it’s time well spent. Most communities have more than one hospice provider. Your doctor, hospital discharge planner, or case manager can help you find them, but you and your family will need to decide which agency you’ll use.

You and your family should look for hospice providers early in the care of your advanced illness, while you have the strength and ability to help make the decision. Quality of care, availability of needed services, the types of services covered, staff training and expertise, and insurance coverage all need to be considered.

Where to find hospice care providers

Local referrals

Your doctor or hospital discharge planner can help you find hospices in your area. Hospice care providers also are listed in the phone book. Referral services may be offered by an Agency on Aging or a local United Way chapter.

State resources

If your doctor or health care team does not provide you a list of hospice agencies in your area, you can contact your state’s hospice organization or its department of health or social services to get a list of licensed agencies. The state health department oversees certification of hospice services. Certification allows them to get funding from Medicare and, in some states, also from Medicaid. Check your phone book for other resources in your area or search online for your state hospice organization.

National resources

National organizations like the National Hospice and Palliative Care Organization, or the National Association for Home Care and Hospice Care can help you find hospice services near you.

Check your insurance coverage

If you have a Medicare, Veteran's Administration, or Medicaid health plan, talk with your health care team about how you can get hospice benefits when they are needed. If you have a work-based or private insurance plan, check with your insurer to determine if you have hospice coverage. If you do, find out what options you may have, including any preferred hospice providers. Doing this ahead of time can save some stress later.

What to look for in a hospice program

There are a number of things you might want to ask about when deciding on a hospice program. Here are some ideas to get you started on a list of questions:

Is the agency reputable?

Accreditation by a nationally recognized group

Check to see if an agency is accredited (certified and licensed) by a nationally recognized group, such as the Joint Commission. The Joint Commission is an independent, not-for-profit organization that evaluates and accredits health care organizations and programs. It’s an important resource in selecting quality health care services.

Approval and certification for Medicare

It's best to be sure the hospice program is approved for Medicare participation. Medicare-certified programs have to meet approval for certain minimum requirements for patient care and management. Many non-Medicare health plans follow Medicare's guidance on approval and certification. Payment for hospice services may depend on the program's approval or certification so check to be sure.

State licensure

Check to see if your state requires a hospice provider or program to be licensed. You can check with your state health department to find out.

References from professionals

Consider finding out how many years the agency has been serving your community. Ask the agency to give you references from professionals – such as a hospital or community social workers – who have used them for other patients. Ask for names and telephone numbers. Consider talking with these people about their experiences with the hospice. Also, check with the Better Business Bureau, your local Consumer Bureau, or the State Attorney General’s office.

Patient’s rights and responsibilities

Ask to see a copy of the agency’s patient’s rights and responsibilities information. Ask them to explain anything you don't understand.

Is the agency a good fit for your needs?

Ask for brochures and consumer information

Be sure to ask if the hospice agency has written statements outlining services, eligibility rules, costs and payment procedures, employee job descriptions, and malpractice and liability insurance. Ask them to send you any brochures or other available information about their services.

What are the requirements for admission?

Find out if the hospice provider or program works with each patient and family to apply policies or negotiate differences? If the hospice imposes conditions that don’t feel comfortable, it may be a sign that it’s not a good fit for you. If you’re not sure whether you or your loved one qualifies for hospice – or whether you even want it – you may want to ask if there is someone from the agency willing to meet with you to help you talk through these concerns.

How are care plans created?

Hospice agencies should offer a care plan that is developed for each new patient. Consider asking if the plan is carefully and professionally developed with input from you and your family. The care plan should be written out and copies given to everyone involved. The care plan should list specific duties, work hours/days, and the name and telephone number of the person in charge of your care. The care plan should also be updated as your needs change. You can ask to see a sample care plan.

Is a primary caregiver required?

Ask if the hospice requires you to have a primary caregiver as a condition of admission. If so, ask about responsibilities that are expected of the primary caregiver, such as if they or someone else needs to be with you all the time. You may want to ask if the hospice can fill in to help with care around job schedules, travel plans, or other responsibilities. Or, if you live alone, ask what other options the hospice suggests.

How is the initial evaluation conducted?

Usually a nurse, social worker, or case manager comes to talk to you about and evaluate the types of services you may need. Ask about where this is done and what the evaluation involves, including who should be present during the visit. It may be important to ask if the initial evaluation includes input from your family doctor and/or other professionals already involved in your care.

What services are offered?

Be sure to find out how quickly the hospice can start services. Some may have certain geographic service boundaries. You may want to ask if they offer specialized services such as rehabilitation therapists, pharmacists, dietitians, or family counselors when these could improve your comfort. If needed, find out if the hospice provides medical equipment or other items that might improve your quality of life.

Who will be providing care?

You may want to ask about references for home care staff, and if the agency trains, supervises, and monitor its staff, caregivers, and volunteers. Ask how often the agency sends a supervisor to the patient’s home to review the care being given to the patient. Ask whether the caregivers are licensed and bonded. Ask about who takes questions or complaints, and how issues are resolved.

How is payment handled?

One important aspect is how the agency handles payment and billing.  Read the agreement carefully before signing it and be sure to keep a copy. Check with your health insurance provider to find out if there are any deductibles and co-pays to expect. For example, certain medicines and respite care may require a co-pay. Ask about resources the agency provides to help you find financial assistance if it’s needed. 

Communication

The agency should have a 24-hour telephone number you can call any time you have questions or problems.  Ask about the procedure for calling for problems, and for making and resolving concerns or complaints. How a hospice responds to your first call to ask about services may be a good sign of the kind of care to expect.

Emergency planning

Something else to consider is if the agency has an emergency plan in case of bad weather, a power failure, or a natural disaster. You can ask to see a copy of the plan. In case of an emergency, you need to know whether the agency can still deliver services at your home.

Limits on treatment

During your first visit be sure to talk about all of the treatments you are currently getting. If you want to continue these things you must make it clear to the hospice provider. Some hospices will not cover things like dialysis, total parenteral nutrition (TPN, or intravenous feedings), blood transfusions, or certain drugs. But some hospices do allow you to add hospice care to your certain types of medical treatment. Find out how the hospice would handle your current treatments before committing to their services.

You’ll also want to find out how the hospice would manage any new health problems that would be curable, such as a urinary tract infection or pneumonia. You may be more comfortable if they’re able to treat these types of problems.

Inpatient or respite care

Even if you plan to get hospice care at home, you might need inpatient or respite care at some point. You might want to ask these types of questions about inpatient and respite care:

• Where is such care provided?
• What are the requirements for an inpatient admission?
• How long can a patient stay?
• What happens if the patient no longer needs inpatient care but can’t go home?
• Can you tour the inpatient unit or residential facility?
• Which hospitals or nursing homes contract with the hospice for inpatient care?
• What kind of follow-up does the hospice provide for inpatients?
• Does the hospice provide as much nursing, social work, and aide care for each inpatient as it does for those at home?
• Does the agency explain your rights and responsibilities as a patient? Ask to see a copy of the agency’s patient’s rights and responsibilities information.

Changing providers

Keep in mind if you don’t like the hospice service you choose, you can change providers.

Check with your insurance company to be sure how to go about this without interrupting payments or services. They can tell you how to stop care with your first hospice agency and sign up with another one.