Frequently Asked Questions
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At any time during a life-limiting illness, it is 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 an all-out effort to "beat" their disease. Hospice staff members are highly sensitive to these concerns and are always available to discuss them with the patient, family, and physician.
The patient and family should feel free to discuss hospice care at any time with their physician, other healthcare professionals, clergy or friends.
Most physicians know about hospice. If your physician wants more information, it is available from the American Academy of Hospice and Palliative Medicine, medical societies, state hospice organizations, local hospices, or the National Hospice and Palliative Care Organization 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.
Certainly, if improvement in the condition occurs and the disease seems to be in remission, the patient can be discharged from hospice and return to aggressive therapy or go on about his or her 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 purpose.
One of the first things hospice will do is contact the patient's physician to make sure he or she agrees that the hospice care is appropriate for this patient at this time. (Hospices may have medical staff available to help patients who have no physician.) The 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 for a life-limiting illness.
Your hospice provider will assess you needs, recommend any necessary equipment, and help make arrangements to obtain it. 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 and safe as possible.
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 care-giving a patient needs. Hospice staff will visit regularly and are always accessible to answer questions and provide support.
In the early weeks of care, it is 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 encourages someone be there continuously. While family and friends must be relied on to give most of the care, hospices do provide volunteers to assist with errands and to provide a break and time away for major caregivers.
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 with the family and to make night visits as appropriate.
Hospice patients are cared for by a team of doctors, nurses, social workers, counselors, home health aides, spiritual caregivers, therapists, and volunteers - and each provides assistance based on his or her area of expertise. In addition, hospices help provide medications, supplies, equipment, hospital services, and additional helpers in the home, as appropriate.
Hospices do nothing either to speed up or to slow down the dying process. Just as doctors and midwives lend support and expertise during the time of child birth, so hospice provides its presence and specialized knowledge during the dying process.
No. Although hospice services are delivered in a personal residence, some patients are cared for in nursing homes or hospice centers.
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 assist patients to be as mobile and self sufficient as possible, and they are often joined by specialists schooled in music therapy, art therapy, diet counseling, and other therapies. hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it addresses these as well. Counselors, including spiritual caregivers, are available to assist family members as well as patients.
Very high. Using some combination of medications, counseling and therapies, most patients can attain a level of comfort that is acceptable to them.
Usually not. It is the goal of hospice to help patients be as comfortable and alert as they desire. By constantly consulting with the patient, hospices have been very successful in reaching this goal.
Hospice care is not an off-shoot of any religion. While some religious organizations 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.
Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in some 47 states, and by most private health insurance policies. To be sure of coverage, families should, of course, check with their employer or health insurance provider.
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 care for those who cannot pay, using money raised from the community or from memorial or foundation gift.
Hospice provides continuing contact and support for family and friends for at least one year following the death of a loved one. Most hospices also provide supportive services for anyone in the community who has experienced the death of a family member, a friend, or a loved one.
Medicare covers all services and supplies related to the life-limiting illness for the hospice patient. In some hospices, the patient may be required to pay a 5% "co-payment" on the medication and a 5% or $5 "co-payment" for respite care. You should find out about any co-payment when choosing a hospice.
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