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 your care options, including hospice. Understandably most people are uncomfortable with the idea of stopping an all-out effort to “cure” the disease; however, our staff members are highly sensitive to these concerns and always available to discuss them with the patient and family.
Should I wait for our physician to raise the possibility of hospice, or should I raise it first?
You and your family should feel free to discuss hospice care at any time with your physician, other healthcare professionals, clergy, or friends. We are always available to help answer any questions.
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 Academy of Hospice Physicians, 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.
Can a hospice patient who shows signs of recovery be returned to regular medical treatment?
Certainly. If your condition improves and the disease seems to be in remission, you can be discharged from hospice and return to aggressive therapy or go on about your daily life. Once discharges, if you should later need to return to hospice care, Medicare and most private insurance will allow additional coverage for this purpose.
What does the hospice admission process involve?
One of the first things we will do is contact your physician to make sure he or she agrees that hospice care is appropriate for you at this time. (We have medical staff available to help if you have no physician.) You 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 you understand that the care is palliative (that is, aimed at pain relief and symptom control) rather than curable. It also outlines the services available. The form Medicare patients sign also tells how electing the Medicare hospice benefits affect other Medicare coverage for a terminal illness.
Is there any special equipment or changes I have to make in my home before hospice care begins?
We 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 gets worse. In general, we will assist in any way we can to make home care as convenient, clean and safe as possible.
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 our hospice team will do is to prepare an individualized care plan that will among other things, address the amount of care giving needed in your situation. Our staff visits regularly and we are always accessible to answer medical questions and provide support.
Must someone be with the patient at all times?
In the early weeks of care, it is usually not necessary for someone to be with you 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 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.
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, we have staff available around the clock to consult with the family and make night visits if the need arises. To repeat: Hospice can also provide trained volunteers to provide “respite care”, to give family members a break.
What specific assistance does hospice provide home-based patients?
Our hospice patients are cared for by a team of doctors, nurses, social workers, counselors, hospice aides, clergy, therapists, and volunteers —— and each provides assistance based on his or her area of expertise. In addition, we can help provide medications, supplies, equipment, hospital services, and additional helpers in the home, if and when needed.
Does hospice do anything to make death come sooner?
Hospice does 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 does hospice provide its presence and specialized knowledge during the dying process.
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.
How does hospice “manage pain”?
Our philosophy is that emotional and spiritual pain are just as real and in need of attention as physical pain, so we endeavor to address each of these domains. Our specialized 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, massage and diet counseling. Finally, counselors of all kinds, including clergy, are available – to assist family members as well as patients.
What is hospice’s success rate in battling pain?
Very high. Using some combinations of medications, counseling and therapies, most patients can be kept pain free and comfortable.
Will medications prevent the patient from being able to talk or know what’s happening?
Usually not. It is the goal of hospice to allow the patient to be pain free but alert. By constantly consulting with the patient, we have been very successful in reaching this goal.
Is hospice affiliated with any religious organization?
We are not an off-shoot of any religion. While some churches and religions 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.
Is hospice care covered by insurance?
Hospice coverage is available widely. It is provided by Medicare nationwide, by Medicaid in some 38 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. We have eligibility coordinators who would be happy to assist with this process.
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.
If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?
The first thing we will do is assist families in finding out whether the patient is eligible for any coverage of which they may not be aware.
Does hospice provide any help to the family after the patient dies?
Hospice provides continuing contact and support for family and friends for at least a year following the death of a loved one. We can also refer bereavement groups and support for anyone in the community who has ex