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. By law 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 health care professionals, clergy or friends.
3. What if our physician doesn't know about hospice?
Most physicians know about hospice. If your physician wants more information about hospice, it is available from the National Council of Hospice Professionals Physician Section, medical societies, state hospice organizations, or the National Hospice Helpline, 1-800-658-8898. In addition, physicians and all others can also obtain information on hospice from the American Cancer Society, the American Association of Retired Persons, and the Social Security Administration.
4. Can a hospice patient who shows signs of recovery be returned to regular medical treatment?
Certainly. 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.
5. 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. (Most hospices have medical staff available to help patients who have no physician.) 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 so-called "hospice election form" 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.
6. Is there any special equipment or changes I have to make in my home before hospice care begins?
Your hospice provider 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. In general, hospice will assist in any way it can to make home care as convenient, clean and safe as possible.
7. 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 to prepare an individualized care plan that will, among other things, address the amount of caregiving needed by the patient. Hospice staff visit regularly and are always accessible to answer medical questions, provide support, and teach caregivers.
8. 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, hospices provide volunteers to assist with errands and to provide a break and time away for primary caregivers.
9. How difficult is caring for a dying loved one at home?
It's never easy and sometimes can be quite hard. At the end of a long, progressive illness, nights especially can be very long, lonely and scary. So, hospices have staff available around the clock to consult by phone with the family and make night visits if appropriate. To repeat: Hospice can also provide trained volunteers to provide "respite care," to give family members a break and/or provide companionship to the patient.
10. What specific assistance does hospice provide home-based patients?
Hospice patients are cared for by a team of physicians, nurses, social workers, counselors, hospice certified nursing assistants, clergy, therapists, and volunteers - and each provides assistance based on his or her own area of expertise. In addition, hospices provide medications, supplies, equipment, and hospital services, related to the terminal illness. and additional helpers in the home, if and when needed.
11. Does hospice do anything to make death come sooner?
Hospice neither hastens nor postpones dying. Just as doctors and midwives lend support and expertise during the time of child birth, hospice provides its presence and specialized knowledge during the dying process.
12. Is caring for the patient at home the only place hospice care can be delivered?
No. Hospice patients receive care in their personal residences, nursing homes, hospital hospice units and inpatient hospice centers.
13. How does hospice "manage pain"?
Hospice believes that emotional and spiritual pain are 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. In addition, physical and occupational therapists can assist patients to be as mobile and self sufficient as they wish, and they are often joined by specialists schooled in music therapy, art therapy, massage and diet counseling. Finally, various counselors, including clergy, are available to assist family members as well as patients.
14. What is hospice's success rate in battling pain?
Very high. Using some combination of medications, counseling and therapies, most patients can attain a level of comfort that is acceptable to them.
15. Will medications prevent the patient from being able to talk or know what's happening?
Usually not. It is the goal of hospice to have the patient as pain free and alert as possible. By constantly consulting with the patient, hospices have been very successful in reaching this goal.
16. Is hospice affiliated with any religious organization?
No. While some churches and religious groups have started hospices (sometimes in connection with their hospitals), these hospices serve a broad community and do not require patients to adhere to any particular set of beliefs.
17. Is hospice care covered by insurance?
Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in 41 states, and by most private insurance providers. To be sure of coverage, families should, of course, check with their employer or health insurance provider.
18. If the patient is eligible for Medicare, will there be any additional expense to be paid?
Medicare covers all services and supplies for the hospice patient related to the terminal illness. In some hospices, the patient may be required to pay a 5% or $5 "co-payment" on medication and a 5% co-payment for respite care. You should find out about any co-payment when selecting a hospice.
19. If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?
The first thing hospice will do is assist families in finding out whether the patient is eligible for any coverage they may not be aware of. Barring this, most hospices will provide for anyone who cannot pay using money raised from the community or from memorial or foundation gifts.
20. Does hospice provide any help to the family after the patient dies?
Hospice provides continuing contact and support for caregivers for at least a year following the death of a loved one. Most hospices also sponsor bereavement groups and support for anyone in the community who has experienced a death of a family member, a friend, or similar losses.