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 are 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. What if our physician doesn't know about Hospice?
Effective February 2011, New York State Law requires all physicians to provide patients who are terminally ill with information and counseling concerning palliative care and end-of-life options. The law is intended to ensure that patients are fully informed of the options available when they are faced with a terminal illness or condition, so that they are empowered to make choices consistent with their goals for care and wishes and beliefs, and to optimize their quality of life. Hospice of Jefferson County is one of many resources available to physicians to assist in implementation of this requirement.
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 a discharged patient should later need to return to Hospice care, Medicare and most private insurance will allow additional coverage for this patient.
5. What does the Hospice admission process involve?
One of the first things Hospice 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. (Hospices have medical staff available to help patients who have no physician.) Tthe patient will also 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 arrangement 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 care-giving needed by the patient. Hospice staff visits regularly and are always accessible to answer medical questions, provide support, and teach caregivers.
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 continually. While family and friends deliver most of the care, Hospices provide volunteers to assist with errands and to provide a break in time away from primary caregivers.
9. How difficult is caring for a dying loved one at home?
It's never easy and can sometimes 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 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 area of expertise. In addition, Hospices provide medications, supplies, equipment, and hospital services, related to the terminal illness.
11. Does Hospice do anything to make death come sooner?
Hospice neither hastens or 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. Although 90% of Hospice patient time is spent in a personal residence, some patients live in nursing homes or 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 addresses 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 but as alert as possible. but constantly consulting with the patient, Hospices have been very successful in reaching this goal.
16. Is Hospice affiliated with any religious organizations?
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 42 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 expenses to be paid?
Medicare covers all services and supplies for the hospice patient. While the Medicare program permits hospices to charge a copayment, Hospice of Jefferson County accepts Medicare payments as payment in full and imposes no additional charges.
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 the death of a family member or friend, or similar losses.