End-of-Life Planning: Hospice Planning and Resources

Hospice care, usually in-home, is designed for people in the terminal stages of their disease. Though hospice care is for those with a life expectancy of less than six months, choosing hospice is not about giving up or giving in. Rather, it is about increasing patients' comfort and reducing their stress and the stress of their caregivers and families. Hospice care is characterized by compassion for the patient and his or her loved ones and caregivers, providing for a maximum amount of quality time. Whether provided in a specialty facility or at home, hospice is meant to help patients live their lives to the fullest. In some cases, people who are in hospice may end up leaving hospice. There are many considerations involved in the decision to use hospice and which providers and services to choose. As with all critical end-of-life decisions, hospice should be addressed as early as possible after diagnosis. When the time comes during which hospice may be appropriate, it may be too late to properly consider the options and make the right choice for the patient.

For a comprehensive set of resources on hospice, including caregivers' tools, please see the Hospice Foundation of America.

A note on palliative care: palliative care and hospice are often confused with each other. The American Society of Clinical Oncology provides the following guidance about palliative care:

Palliative care is any form of treatment that concentrates on reducing a patient’s symptoms, improving quality of life, and supporting patients and their families. People with cancer often receive curative therapy (treatment to eliminate the disease) and treatment to ease symptoms at the same time.

Palliative care is given as early as possible in the cancer treatment process and continues through all stages of illness, regardless of whether a cure is the expected outcome. If you decide to stop disease-directed treatment, palliative care focuses on managing the symptoms caused by cancer.

Palliative care is given in a doctor’s office, hospital, cancer center, long-term care facility, or your home. Your doctor or a hospital social worker will help you find palliative care.

Comparing palliative care and hospice care
Although you may hear these terms used in similar ways, they are slightly different. Palliative care is given at every step of the treatment process and at all stages, whereas hospice care is a form of palliative care given to people with cancer who are expected to live six months or less, regardless of their age or type of cancer. If a person chooses to make the transition to hospice care, palliative care specialists will help with the transition to hospice care and address the physical and emotional issues that come with that choice.

What questions should I ask about hospice care?

The American Cancer Society suggests the following considerations when deciding on a hospice program: 

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.

If your state requires it, is the program licensed?

Consumer information
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?

Care plan
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 supervisor in charge. Will the care plan be updated as your needs change? Ask if you can look at a sample care plan.

Primary caregiver
Does the hospice require the patient to have a primary caregiver as a condition of admission? What responsibilities are expected of the primary caregiver? Will someone need to be with the patient all the time? What help can the hospice offer to organize and assist the family's efforts? For example, can the hospice help you fill in around job schedules, travel plans, or other responsibilities? If the patient lives alone, what other options can the hospice suggest?

Initial evaluation
Does a nurse, social worker, or therapist come to the patient to talk about and evaluate the types of services he or she may need? Is this done in the person's home, rather than over the telephone? Does it highlight what people can do for themselves? Does it include input from the family doctor and/or other professionals already involved in the person's care? Are other members of the 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 (two 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?

Telephone response
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 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.

Emergency planning
Does the agency have an emergency plan in place in case of a power failure or 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 the patient's comfort? If needed, does the hospice provide medical equipment or other items that might improve the person's quality of life?

Limits on treatment
If you are the person with lung cancer, 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, most often the bigger ones, do offer open-access care, which allows 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 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.

Inpatient care
What are the policies about 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?

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.