Top questions people ask about hospice

1. When should a decision about entering a hospice program be made and who should make it?

At any time during a life-limiting illness, it’s appropriate to discuss all of a patient’s care options, including hospice. The decision belongs to the patient. Understandably, most people are uncomfortable with the idea of stopping aggressive efforts to “beat” the disease. Hospice staff members are highly sensitive to these concerns and always available to discuss them with the patient and family.

2. Should I wait for our physician to raise the possibility of hospice, or should I raise it first?

The patient and family should feel free to discuss hospice care at any time with their physician, other healthcare professionals, clergy or friends.

3. Can a hospice patient who shows signs of recovery be returned to regular medical treatment?

Yes. If the patient’s condition improves and the disease seems to be in remission, patients can be discharged from hospice and return to aggressive therapy or go on about their daily life. If the discharged patient should later need to return to hospice care, Medicare and most private insurance will allow additional coverage for this purpose.

4. What does the hospice admission process involve?

One of the first things the hospice program will do is contact the patient’s physician to make sure he or she agrees that hospice care is appropriate for this patient at this time. The patient will be asked to sign consent and insurance forms. These are similar to the forms patients sign when they enter a hospital. The Hospice Election Statement says that the patient understands that the care is palliative (that is, aimed at pain relief and symptom control) rather than curative. It also outlines the services available. The form Medicare patients sign also tells how electing the Medicare hospice benefit affects other Medicare coverage.

5. Is there any special equipment or changes I have to make in my home before hospice care begins?

Hospice will assess your needs, recommend any equipment, and help make arrangements to obtain any necessary equipment. Often the need for equipment is minimal at first and increases as the disease progresses. Hospice will also assist in any way it can to make home care as convenient, clean and safe as possible.

6. How many family members or friends does it take to care for a patient at home?

There’s no set number. One of the first things a hospice team will do is prepare an individualized care plan that will, among other things, address the amount of caregiving needed by the patient. Hospice staff visits regularly and are always accessible to answer medical questions, provide support, and teach caregivers.

7. Must someone be with the patient at all times?

In the early weeks of care, it’s usually not necessary for someone to be with the patient all the time. Later, however, since one of the most common fears of patients is the fear of dying alone, hospice generally recommends someone be there continuously. While family and friends do deliver most of the care, hospice provides volunteers to assist with errands and to provide a break and time away for primary caregivers.

8. What specific assistance does hospice provide homebased patients?

Hospice patients are cared for by a team of physicians, nurses, social workers, counselors, hospice certified nursing assistants, clergy, therapists, and volunteers. Each provides assistance based on his or her own area of expertise. In addition, hospice provides medications, supplies, equipment, and hospital services, related to the terminal illness.

9. Does hospice do anything to make death come sooner?

Hospice neither hastens nor postpones dying. The goal is to keep the patient as alert and comfortable as possible.

10. Is caring for the patient at home the only place hospice care can be delivered?

No. Although 90% of hospice patient time is spent in a personal residence, some patients live in nursing homes or senior living facilities.

11. How does hospice “manage pain?” Hospice believes that emotional and spiritual pain is just as real and in need of attention as physical pain, so it can address each. Hospice nurses and doctors are up to date on the latest medications and devices for pain and symptom relief.