A: It often is difficult to broach the topic of hospice. Many people misunderstand and think that hospice is an immediate death sentence. It is not! While it does deal with the end of life, it is a way to live the end of one’s life and to define a different approach to medical treatment. It also is not unusual for people to move on and off of hospice care as their conditions change.
The most important thing to remember about hospice is that communication is key. Hospice workers are specially trained to help families through this stressful time. You do not need to be embarrassed about anything in front of them. Do not worry if you cannot remember your questions, let alone the answers. That is completely normal. Do not be afraid to ask questions when you remember them (or make a list and ask them all at once) or to ask for clarification if you do not understand. It is vital that the patient and the family know what to expect. For example, while hospice services are available 24 hours a day, 7 days a week, this does not mean that hospice provides 24-hour care to each patient.

Here are some useful questions for you to ask the hospice admissions representative when they visit you:

  • Is the hospice licensed, (where applicable) and Medicare/Medicaid certified?
  • Does the hospice provide the services you want/need? This includes making sure that it is religiously and culturally appropriate for you.
  • What does the hospice expect from you and your caregiver support system? Are you comfortable with this? Is this realistic? Do not feel guilty if you cannot provide the care/support that the agency suggests.  It is important to be realistic about what you and the family and friends can provide.
  • Does the hospice provider adequately support the caregivers?
  • Can the hospice provider provide inpatient or respite care if necessary? Where? What are the limitations?
  • Are the hospice provider’s positions on resuscitation, hydration, and antibiotics similar to yours? Make certain that you clearly communicate your wishes to them.
  • Will your insurance plan work with this hospice provider? How much is covered?
  • What out-of-pocket expenses should you anticipate? How much will they cost?
  • Is there a sliding scale payment plan for services not covered by insurance?
  • Most importantly, are you comfortable with this particular hospice provider? If not, find another.