Understanding Hospice

WNEP-TV's "Understanding Hospice" is an educational resource for the community designed to help families facing the challenge of life limiting illness. Hospice is a coordinated program of supportive care that addresses the physical, social, emotional and spiritual needs of patients experiencing life-threatening illness and their families. 
 
Frequently Asked Questions:

What is hospice?

Hospice allows a terminally ill patient to spend their last days at home, in familiar settings, with their loved ones. Hospice began in the 1970's, growing from the idea that modern medicine was depriving the natural dying process of its family ties and robbing it of its dignity.

Since that time hospice has grown tremendously. There are now more than 3,000 hospices nationwide and over 100 in Pennsylvania.

The service hospice provides focuses on maximizing the quality of remaining life by addressing the physical, social, emotional and spiritual needs of terminally-ill patients and their families. Hospice focuses on relieving a patient's pain and making them as comfortable as they want to be so they can make the most of the time that remains. Hospice provides complete support for the entire family.

Care is delivered in the home or an inpatient setting and is provided by a medically directed interdisciplinary team. Each team includes a physician, nurses, social workers, clergy, home health aides, therapist and any number of volunteers. Bereavement support is provided to both families and caregivers. The type and scope of services provided is based on ongoing needs assessments and is unique to each patient and family.

What services will hospice provide, and who will perform them?

The core services hospice provides are: nursing, social services, physician, counseling, home health aide and homemaker services, and bereavement. Hospice staff and volunteers will provide assistance in almost anyway you need, while encouraging patients to be as active and self-sufficient as possible. No job is too big or too small for the hospice team. Jobs may include:

• Pain relief through medication
• Matters of personal cleanliness and coordination of necessary medical equipment
• "Being there" - to let the patient know he or she is not alone
• Talking openly about feelings
• Assisting with household chores and helping to put financial matters in order
• Back rubs and foot massages
• Providing favorite foods or music
• Joining in favorite pastimes

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.

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 of she agrees that hospice care is appropriate for this patient at this time. (Hospice 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 patient 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 terminal illness.

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

Your hospice provider will assess your 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, clean and safe as possible.

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.

Will medications prevent the patient from being able to talk or know what's happening?

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.

Is hospice affiliated with any religious organization?

Hospice care is not affiliated with 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.

Is hospice care covered by insurance?

Hospice coverage is widely available. It is provided by Medicare nationwide, by Medicaid in some 42 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.

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 the patients 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 challenging.  Some hospices have staff available around the clock to consult with the family and teach them how to cope during this difficult time.

What specific assistance does hospice provide home-based patients?

Hospice patients are cared for by a team of doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and volunteers - 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.

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 our whether the patient is eligible for any coverage which they may not be aware. Barring this, most hospices will provide care for those who cannot pay, using money from the community or from memorial or foundation gifts.

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 one year following the death of a loved one. Most hospices also sponsor bereavement and support groups for anyone in the community who has experienced the death of a family member, friend, or loved one.

If the patient is eligible for Medicare, will there be any additional expenses to be paid?

Medicare covers all services and supplies related to the terminal illness for the hospice patient. You should find out about any co-payment when choosing a hospice.

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 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.

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

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.

Does hospice do anything to make death come sooner?

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, hospice provides its presence and specialized knowledge during the dying process.

Is the home the only place hospice can be delivered?

No. Although most hospice services are delivered in a personal residence, some patients live in nursing homes or a hospice residence. There are both free-standing and in-patient hospice facilities in Pennsylvania.

How does hospice "manage pain"?

Hospice nurses and doctors are up-to-date on the latest medication 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 clergy, are available to assist family members as well as patients.

What does Medicare cover?

When a Medicare-eligible patient receives services from a Medicare-approved hospice, Medicare pays almost the entire cost. In general, coverage includes:

• Physician services
• Nursing care
• Medical appliances and supplies as appropriate
• Drugs for symptom management and pain relief
• Short-term inpatient and respite care
• Homemaker services and home health aid
• Physical and other therapies
• Counseling

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