ACS :: What Questions Should I Ask About Hospice Care?

There are a number of things you might want to ask about when deciding on a hospice program. We will review some of them here.

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 is 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.

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 hospice work with each patient and family to apply policies or negotiate differences? If the hospice imposes conditions that do not feel comfortable, it may be a sign that it is not a good fit for you. If you are not sure whether you or your loved one qualifies for hospice -- or whether you even want it -- is the agency willing to meet with you to help you talk through these concerns?

Does the agency create a plan of care for each new patient? Is the plan carefully and professionally developed with input from you and your family? Is the plan of care 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 supervisor in charge. Is the care plan updated as your needs change? Ask if you can look at a sample care plan.

Does the hospice require you to have a 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? Can the hospice help you fill in around job schedules, travel plans, or other responsibilities? If you live alone, what other options can the hospice suggest?

Does 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 over the telephone? 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 is 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. Be sure to keep a copy. What resources does the agency provide to help you find financial assistance if it is needed? Are standard payment plan options available?

Does the agency have a 24-hour telephone number you can call when you have questions? 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 return your call? Do they speak in plain, understandable language? What is the procedure for making and resolving complaints?

How did the hospice respond when you made the very first contact with 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 place in case of a power failure or natural disaster? Ask to see a copy of the plan. In case of an emergency, you need to know whether the agency can still deliver services to 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?

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 that 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, most often the bigger ones, do offer open-access care which allows you to add hospice care to your current medical treatment. Still, this is not always an option. Find out how the hospice would handle your current treatments before committing to their services.

You may also want to find out how the hospice would manage it if you should get a health problem that is curable, such as a urinary tract infection or pneumonia. Even though they cannot cure your cancer, you may be more comfortable if they are able to treat these smaller problems.

What are the policies regarding inpatient care? Where is such care provided? What are the requirements for an inpatient admission? How long can the patient stay? What happens if the patient no longer needs inpatient care but cannot go home? Can you tour the inpatient unit or residential facility? Which hospitals contract with the hospice for inpatient care? What kind of follow-up does the hospice provide for inpatients? Do nursing homes contract with the hospice? Does the hospice provide as much nursing, social work, and aide care for each patient in the nursing home as it does in the home setting?

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.

You and your loved ones are facing a sensitive and difficult time. Hospice care is a way to get the help you all may need. Please remember that there are also professional cancer information specialists who are ready to talk with you about your concerns. They are available 24 hours a day, 7 days per week at our National Cancer Information Center. You can speak to one of them by calling 1-800-227-2345.

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