How do I find a hospice program?
Finding the hospice program that best meets your needs may take some research, but it’s time well spent. Since most communities have more than one hospice provider, you and your family will need to decide which agency you’ll use.
Your doctor or hospital discharge planner can help you find hospices in your area. Hospice care providers also are listed in the phone book. You may also find information and referral services through your American Cancer Society, an Agency on Aging, or a local United Way chapter.
You and your family should do this early in your care while you have the strength and ability to take part in 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. Here are some things to think about as you start your search:
You may contact your state’s hospice organization or its department of health or social services to get a list of licensed agencies where you live. The state health department oversees certification of hospice services. Certification makes them able to get funding from Medicare and, in some states, also from Medicaid. Check the blue pages of your phone book for other resources in your area or search online for your state hospice organization.
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.
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 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.
Is this hospice program certified by Medicare? Medicare-certified programs have to meet at least minimum requirements for patient care and management. (Remember: Medicare will only pay for care given by agencies they’ve certified.)
If your state requires it, is the program licensed? You can check with your state health department to find out. They’re listed in the blue pages of your phone book.
Does the agency have 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.
How many years has the agency been serving your community? Can the agency give you references from professionals – such as a hospital or community social workers – who have used this agency? Ask for names and telephone numbers. A good agency will give you these if you ask for them. Talk 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.
How well does the hospice work 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 – is someone from the agency willing to meet with you to help you talk through these concerns?
Does the agency create a care plan for each new patient? Is the plan carefully and professionally developed with input from you and your family? Is the care plan written out and are copies given to everyone involved? Check to see if it lists specific duties, work hours/days, and the name and telephone number of the person in charge of your care. Will the care plan be updated as your needs change? Ask if you can look at a sample care plan.
Does the hospice require you to have a main (primary) caregiver as a condition of admission? What responsibilities are expected of the primary caregiver? Will someone need to be with you all the time? What help can the hospice offer to organize and assist the family’s efforts? For example, can the hospice fill in around job schedules, travel plans, or other responsibilities? If you live alone, what other options can the hospice suggest?
Will a nurse, social worker, or therapist come to you to talk about and evaluate the types of services you may need? Is this done in your home, rather than by phone? Does it highlight what you can do for yourself? Does it include input from your family doctor and/or other professionals already involved in your care? Are other members of your family included in this visit?
Are there references on file for home care staff? Ask how many references the agency requires for each staff member who gives home care (2 or more should be required). Does the agency train, supervise, and monitor its caregivers? 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. Who do you call if you have questions or complaints? What’s the procedure for resolving issues?
How does the agency handle payment and billing? Get all financial arrangements – costs, payment procedures, and billing – in writing. Read the agreement carefully before signing it and be sure to keep a copy. Check with your health insurance provider to find out what deductibles and co-pays to expect. For example, certain medicines and respite care may require a co-pay. What resources does the agency provide to help you find financial assistance if it’s needed? Are payment plans available?
Does the agency have a 24-hour telephone number you can call any time you have questions or problems? How does the hospice respond to calls? Does the telephone staff seem caring, patient, and competent from the first contact, even if they need to call you back? Do they speak in plain, understandable language? What’s the procedure for making and resolving complaints?
How did the hospice respond when you first contacted them? How a hospice responds to your first call for help may be a good sign of the kind of care to expect.
Does the agency have 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.
How quickly can the hospice start services? What are its geographic service boundaries? Does the hospice offer specialized services such as rehabilitation therapists, pharmacists, dietitians, or family counselors when these could improve your comfort? If needed, does the hospice provide medical equipment or other items that might improve your quality of life?
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 current 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.
You might want to ask these types of questions about inpatient 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?
- Patient’s rights and responsibilities
- 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.
- What if I don’t like the hospice service I choose?
- If you change your mind after choosing a hospice program, you can change hospice 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.
Hospice Directory. Hospice Myths and Realities. Accessed at www.hospicedirectory.org/cm/about/choosing/myths_facts on April 20, 2016.
Hospice Directory. How to Choose. Accessed at http://hospicefoundation.org/End-of-Life-Support-and-Resources/Coping-with-Terminal-Illness/How-to-Choose on April 20, 2016.
Last Medical Review: April 28, 2016 Last Revised: May 13, 2016