FAQ About Hospice

What is hospice?

Hospice offers comprehensive, compassionate care for people at the end of life and support for families. Hospice offers palliative care that seeks to comfort rather than cure.

Who can receive hospice care?

Any person facing the advancing stages of any terminal illness is eligible for care. Hospice care is appropriate when the following conditions are met:

The physician thinks that the patient will live 6 months or less if the disease runs its normal course; aggressive treatments are not working or providing relief to the patient; and the patient, family and physician agree and understand that the focus of care is on comfort (pain control and symptom management), not cure.

What patient care services does Accredited Hospices of America offer?

Hospice care can include a wide variety of services to relieve the patient and family of many of the burdens associated with a terminal illness. Hospice patients are cared for by a team of doctors, nurses, social workers, certified nursing assistants, clergy and volunteers. Each provides assistance based on his or her area of expertise. In addition, Accredited Hospices of America provides medications, supplies and equipment related to the terminal illness. A registered nurse is on call 24 hours per day, seven days a week.

How does hospice address pain management?

Accredited Hospices of America addresses physical, emotional and spiritual pain. Hospice nurses and doctors are up to date on the latest medications and techniques for pain and symptom relief. The success rate of hospice in managing pain is very high, and most patients can be kept comfortable.

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

Usually not. It is the goal of hospice to allow the patient to be pain free but alert. By continually consulting with the patient, hospices have been very successful in reaching this goal.

What is the role of the patient’s physician in hospice care?

The patient’s physician remains responsible for and coordinates care of the patient with Accredited Hospices of America’s nurses.

Does hospice do anything to make death come sooner?

Accredited Hospices of America recognizes dying as a natural process and neither hastens nor postpones death.

 

Where is hospice care provided?

Hospice is a philosophy of care, not a place. Most hospice patients receive care at home or at the home of a relative or friend. Hospice care can also be provided in long term care facilities and nursing homes. Some hospices have residential units designed to provide a homelike setting for patient care. Accredited Hospices of America does not have an in patient facility.

How is hospice different from other types of home health?

Comfort vs. Cure: For most home health care providers, the goal is to make the patient well. With hospice care, the staff and family recognize that the patient will not get well. They focus on comfort and support rather than cure.
Interdisciplinary Team Approach: In hospice, all members of the care team – physicians, nurses, social workers, chaplain, nursing assistants and volunteers – work together to coordinate care.

Family Focus: Hospice care focuses on the entire family. The hospice team teaches the family how to be involved in their loved one’s care.

Grief Support: Hospice care does not end when a patient dies. Hospice support staff and volunteers maintain contact with the family for at least one year after the death of a patient.

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

The hospice RN and social worker 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, hospice will assist in any way it 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 is no set number. One of the first things the hospice team will do is to prepare an individualized care plan that will address the amount of caregiving needed. Hospice staff visits regularly and are always accessible to answer medical questions and provide support.

Is hospice care only for cancer patients?

No. Hospice care is for all terminally ill patients in the end-stage of any disease, including, but not limited to lung disease (emphysema, fibrosis, COPD, etc.), heart disease, neurological disease (ALS, Alzheimer’s) and AIDS.
There is also no age restriction. While most patients in Hospice are over 60 years of age, younger adults and children are also served.

Who can refer a patient to Accredited Hospices of America?

Although anyone can refer a patient to a hospice program, many referrals originate with the attending physician. To be admitted, a patient must agree to treatment aimed at comfort rather than cure and have an incurable disease resulting in a limited life expectancy as certified by a physician.

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 the disease. Hospice staff members are highly sensitive to these concerns and are always available to discuss them with the patient and family.

When is it the right time to contact hospice?

It is important that services begin as soon as a patient qualifies for care. Hospice becomes an appropriate choice when curative treatments are no longer effective. Hospice can provide relief from physical and emotional pain so that the patient can live their remaining days in comfort and dignity.

What if my doctor does not mention hospice?

The patient and family should feel free to discuss hospice care at any time with their physician, other health care professionals, clergy or friends.

What does the hospice admission process involve?

One of the first things Accredited Hospices of America 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.

A hospice nurse will arrange an admissions appointment to make sure that the patient agrees that hospice care is appropriate. The patient will be asked to sign a consent form and insurance forms, similar to the forms patients sign when they enter a hospital. The form says that the patient understands that the care is palliative (aimed at pain relief and symptom control) rather than curative and 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.

Who pays the costs of care by Accredited Hospices of America?

Hospice care is covered by Medicare, Medicaid and most private insurance. Patients without insurance resources are accepted and are provided the same level of care as patients with insurance.

What if the patient gets better?

If the patient’s condition improves, they can be discharged from hospice and begin treatment or resume daily life. If the patient should later need to return to hospice care, Medicare and most insurance programs will allow additional coverage.

Does hospice care end when the patient dies?

A unique feature of hospice care is that continuing support for family is provided for at least a year following the death of a loved one.

What other programs does Accredited Hospices of America offer?

Accredited Hospices of America coordinates grief support groups, provides individualized grief counseling through the One on One program.

 

When is the right time to ask about hospice?

Now is the best time to learn more about hospice and ask questions about what to expect from hospice services. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.

How does hospice care begin?

Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.

Will I be the only hospice patient that the hospice staff serves?

Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team). For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice the number of patients/families as nurses. If needed, home health aides, who provide personal care to the patient, will visit most frequently.

All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness. The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services. Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.

 

Is hospice available after hours?

Hospice care is available ‘on-call’ after the administrative office has closed, seven days a week, 24 hours a day. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call as well.

How does the hospice work to keep the patient comfortable?
Many patients may have pain and other serious symptoms as illness progresses. Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress. Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during the course of their stay in hospice. Hospice staff works with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. The care plan is reviewed frequently to make sure any changes and new goals are in the plan.

What role does the hospice volunteer serve?

Hospice volunteers are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, and lending emotional support and companionship to patients and family members.

Because hospice volunteers spend time in patients’ and families’ homes, each hospice program generally has an application and interview process to assure the person is right for this type of volunteer work. In addition, hospice programs have an organized training program for their patient care volunteers. Areas covered by these training programs often include understanding hospice, confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.

 

Can I be cared for by hospice if I reside in a nursing facility or other type of long-term care facility?

Hospice services can be provided to a terminally ill person wherever they live. This means a patient living in a nursing facility or long-term care facility can receive specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.

What happens if I cannot stay at home due to my increasing care need and require a different place to stay during my final phase of life?
A growing number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals or inpatient residential centers to care for patients who cannot stay where they usually live. These patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out, well before hospice may be needed, if insurance or any other payer covers this type of care or if patients/families will be responsible for payment.

Do state and federal reviewers inspect and evaluate hospices?

Yes. There are state licensure requirements that must be met by hospice programs in order for them to deliver care. In addition, hospices must comply with federal regulations in order to be approved for reimbursement under Medicare. Hospices must periodically undergo inspection to be sure they are meeting regulatory standards in order to maintain their license to operate and the certification that permits Medicare reimbursement.

 

How can I be sure that quality hospice care is provided?

Many hospices use tools to let them see how well they are doing in relation to quality hospice standards. In addition, most programs use family satisfaction surveys to get feedback on the performance of their programs. To help hospice programs in making sure they give quality care and service, the National Hospice and Palliative Care Organization has developed recommended standards entitled ‘Standards of Practice for Hospice Programs’ as one way of ensuring quality.

There are also voluntary accreditation organizations that evaluate hospice programs to protect consumers. These organizations survey hospices to see whether they are providing care that meets defined quality standards. These reviews consider the customary practices of the hospice, such as policies and procedures, medical records, personal records, evaluation studies, and in many cases also include visits to patients and families currently under care of that hospice program. A hospice program may volunteer to obtain accreditation from one of these organizations.

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