Joliet Area Community Hospice - A Special Kind of Care

Life is a transition of stages, each a rite of passage taking us across the final threshold of new experiences. Inevitably, we all will face the final door, the final threshold. Yet for this stage, most are ill-prepared.

Hospice is a special kind of care for dying people. Most people do not want to die alone in sterile, impersonal surroundings, hooked up by tubes to machines, and cut off from family, friends and everything that is familiar.

Hospice treats the physical needs of patients, as well as the person's emotional and spiritual needs. Yet Hospice goes beyond the dying person and considers helping family members as an essential part of its mission.

What is Hospice Care?
What is Hospice in the Nursing Home?
How is Hospice Paid For?
What is the Medicare Hospice Benefit?
What are Common Myths And Questions About Hospice?

What Is Hospice Care?
Hospice provides comfort and compassion when they are needed most. Hospice care enables a person to retain his or her dignity and maintain quality of life during the end of life. Hospice care encompasses the support given to the patient and the family during the illness and through their bereavement.

Hospice Cares Compassionately for Terminally Ill People by:
• Addressing the patient's physical, psychological, and spiritual needs.
• Helping family members during and after the dying process.
• Providing comprehensive palliative care when there is no cure, with an emphasis on pain and symptom control.
• Enabling a person to live the last weeks and months of life as fully and comfortably as possible, with dignity, at home or in a home-like setting. Today, ninety-six percent of hospice days of care are provided at the patient’s residence.
• Accepting death as a natural part of life, seeking neither to hasten nor prolong the dying process.

The Hospice Care Team
Hospice care is provided on an as-needed basis – 24 hours a day, 7 days a week – by an
interdisciplinary team consisting of:
• Physicians
• Nurses
• Home health aides
• Social workers
• Chaplains or clergy
• Bereavement counselors
• Specially trained volunteers; and
• Other health care professionals as needed.

Services Provided by Hospice
Among its major responsibilities, the interdisciplinary hospice team:
• Manages the patient’s pain and symptoms;
• Assists the patient with the emotional and psychosocial aspects of dying;
• Provides needed drugs, medical supplies, and equipment;
• Coaches the family on how to care for the patient;
• Offers spiritual care;
• Delivers special services like speech and physical therapy when needed;
• Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time; and
• Provides bereavement care and counseling to surviving family and friends.

What is Hospice In The Nursing Home?
“ Dad was living in the nursing home and I thought I would have to take him home to have Hospice. I was surprised and relieved to be told that Hospice could take care of him in the nursing home. The care they provide is phenomenal. Ever since he was admitted into Hospice, he’s been a new man. Before he was lethargic, slept all the time, didn’t eat or talk much; now he is more alert, holds conversations, plays Yatzee and he can enjoy his favorite foods again… The positive changes we have seen in Dad I think are from the extra attention from the Hospice staff, the comfort care room, and just the peace of mind Hospice brings…we saw what hospice could do when they took care of mom at home.”
Nancy Kraus and Fred Lotarski about their father Joseph Lotarski, a resident of Morris Health Care & Rehab

Joliet Area Community Hospice provides services to patients wherever home is: their own private residence; nursing homes or the Hospice Home.

For many people a nursing home becomes their home. The aging population has grown in the United States. The National Hospice and Palliative Care Organization reports that in 2003, for all Americans who died about 25% died in a nursing home facility. Some persons who could benefit from Hospice care are not able to be cared for in their homes. Family members may be elderly; ill themselves; or there may be no family close by. Hospice care may improve the quality of end-of-life care for nursing home residents, but hospice is often underutilized by this population. People do not always make their preferences known to family and physicians; they are not aware of hospice services in nursing homes or how it is paid for.

Hospice care does not take the place of care provided by the nursing home staff but adds a specialized dimension to that care:
• Dedicated hospice team members offer expertise in pain and symptom management related to end-of-life issues;
• Enhance personal care given by nursing home staff;
• Provide family counseling and pastoral support;
• Offer volunteer visits;
• Provide bereavement support to family members and nursing home staff.

Admission criteria for hospice services in a nursing home:
• The resident has a serious and progressive illness with a limited life expectancy.
• The resident\family is aware of his or her condition, is no longer pursuing treatment for a cure, and accepts the philosophy of hospice as supportive care.
• The resident’s physician gives approval for admission into the hospice program.

A referral can be initiated by anyone. When a call is received, one of our team members meets with the patient, family and nursing home staff. If everyone is in agreement that hospice is appropriate, then the patient is admitted into the hospice program. The nursing home staff and the hospice team work together with the patient and family to develop a plan of care.

The Joliet Area Community Hospice program has carefully selected several leading nursing homes where hospice patients may stay on a long term basis:

• Deerbrook Care Center - Joliet, IL
• Embassy Care Center - Wilmington, IL
• Frankfort Terrace - Frankfort, IL
• Glenwood Care Center - Joliet, IL
• Hillside Nursing Home - Yorkville, IL
• Joliet Terrace - Joliet, IL
• Lakewood Nursing & Rehab Center - Plainfield, IL
• Lemont Nursing Home & Rehab - Lemont, IL
• Meadowbrook Manor - Bolingbrook, IL
• Meadowbrook Manor - Naperville, IL
• Morris Healthcare & Rehab - Morris, IL
• Mother Theresa Home - Lemont, IL
• Our Lady of Angels - Joliet, IL
• Provena Villa Franciscan - Joliet, IL
• Rosewood Care Center - Joliet, IL
• Salem Village Nursing Home - Joliet, IL
• Sunny Hill Nursing Home - Joliet, IL
• The Tillers - Oswego, IL
• Walnut Grove Village - Morris, IL

In addition to the above nursing facilities, Joliet Area Community Hospice cares for patients in assisted living, independent living, and community based facilities.

How is Hospice Paid For?
If the patient is over the age of 65 and is entitled to Medicare Part A benefits, Hospice services are covered as described below. If the patient is under the age of 65 and not eligible for Medicare but has private insurance, Joliet Area Community Hospice will contact and work with your insurance company to cover hospice services.

Joliet Area Community Hospice will not turn anyone away because of lack of insurance. Due to funding from memorials, fundraising and other donations, hospice care will be provided to anyone seeking our services, even if they are not covered under insurance, Medicare or Medicaid.

The Medicare Hospice Benefit
Medicare defines a set of hospice core services, which many hospices surpass through voluntary, community-based efforts. The Medicare Hospice Benefit, initiated in 1983, is covered under Medicare Part A (hospital insurance). Medicare beneficiaries who choose hospice care receive a full scope of non-curative medical and support services for their terminal illness. Hospice care also supports the family and loved ones of the patient through a variety of services, enhancing the value of the Medicare Hospice Benefit.

The Medicare Hospice Benefit Provides for:
• Physician services
• Nursing care
• Medical appliances and supplies
• Drugs for symptom management and pain relief
• Short-term inpatient and respite care
• Homemaker and home health aide services
• Counseling
• Social work service
• Spiritual care
• Volunteer participation
• Bereavement services
• Physical therapy, occupational therapy and speech/language pathology services

Who is Eligible?
Medicare has three key eligibility criteria:
• The patient’s doctor and the hospice medical director use his/her best clinical judgment to certify that the patient is terminally ill with a life expectancy of six months or less, if the disease runs its normal course;
• The patient chooses to receive hospice care rather than curative treatments for his/her illness;
• The patient enrolls in a Medicare-approved hospice program.

What Are Common Myths And Questions About Hospice?
Quality end-of-life care isn’t about how you die; it’s about how you live. Hospice and palliative care focuses on how dying persons and their loved ones live each day, providing comfort and guidance along the way. Many myths and questions exist about hospice that deter people from seeking out this compassionate system of care.

Choosing hospice means that I’m “giving up.”
When cure is no longer possible, hospice provides the type of care most people say they want at the end of life--comfort and quality of life. The most common statement made by families who chose hospice for their loved one is, “we wish we had known about hospice sooner.”

My grandmother died in a great deal of pain, but that’s just to be expected as part of the dying process.
Hospice doctors, nurses, and others are specially trained to control each person’s pain, while still keeping the patient awake and alert whenever possible. In most cases, pain can be managed to the patient’s satisfaction which allows them to participate in their family life.

My mother lives in a nursing home and I can’t bring her to my home to care for her, so hospice wouldn’t be available.
Hospice is available in nursing homes, assisted living facilities, and even hospitals--wherever the patient lives and considers home.

Hospice care just keeps dying people heavily medicated; all they focus on is the physical process of dying.
Hospice pain management is highly specialized and tailored to each individual, to ensure the highest quality of life possible to live each day until the end. In addition, hospice utilizes complementary therapies such as music and art, and provides emotional and spiritual support to the dying person and the loved ones, including bereavement support for the family after the death.

My partner’s doctor suggested hospice; that must mean that my partner has only a few days left to live.
Unfortunately, Hospice may not be thought of until the last few days, but is much more beneficial to the patient and the family if the patient is referred to hospice services much sooner. Hospice care is available to anyone who has a life-threatening or terminal illness, that has a prognosis of six months or less if the illness runs its normal course. Many diseases are unpredictable and can take place over a much longer time frame than normally anticipated. Joliet Area Community Hospice will continue to provide care to patients, even if they surpass the six month mark. Many of our families have commented that they wished they would have had hospice involved sooner.

I have recently been diagnosed with a terminal illness. When should a decision about entering a hospice program be made?
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 aggressive efforts to "beat" the disease. However, understanding how hospice works and what the benefits are now will help you feel more in control later. Hospice staff members are highly sensitive to these concerns and always available to discuss them with the patient and family.

Someone told me hospice care is only for older people with cancer.
Hospice programs have developed guidelines to care for anyone, at any age, facing a life-threatening or terminal illness regardless if the diagnosis is cancer related or not. In addition, Joliet Area Community Hospice has a specialized pediatric team to care for patients under the age of 21. Our home care teams care for patients age 21 – 100+.

My grandfather doesn’t have private insurance, so he won’t be able to afford good end-of-life care when he needs it.
Hospice is fully covered by Medicare, Medicaid, and by most insurance companies. In addition, Joliet Area Community Hospice provides charity care to patients without insurance. No patient is turned away from hospice services due to inability to pay.

I heard that hospice care hastens death.
Actually, research has found that hospice patients lived longer on average. Depending on the disease, it ranged from 20 days for those with a diagnosis of gallbladder cancer to 69 days for breast cancer patients. This can be attributed to the pain and symptom management and focus on all aspects of the patient's needs, from medical to emotional to spiritual. All of that combined makes for a much more peaceful and less stressful experience for both the patient and the family.

Once a patient chooses hospice care, can he or she continue to receive care from their primary physician?
Joliet Area Community Hospice reinforces the patient-primary care physician relationship by advocating either office or home visits, according to the physician's preference. We wors closely with the primary care physician and considers the continuation of the patient-physician relationship to be of highest priority.

If my primary physician is unable to follow me in hospice who will?
Joliet Area Community Hospice will assign one of our physicians to care for you.

What does the hospice admission process involve?
One of the first things Joliet Area Community Hospice will do is contact the patient's physician to make sure that he or she agrees that hospice care is appropriate for this patient. Then one of our team members will meet with the patient and family to explain how hospice care works and insurance coverage - which is typically 100% of services related to the hospice diagnosis.
The patient will 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.

A friend's mother is in the final stages of Alzheimer's and receiving hospice care. I thought hospice was only for terminal cancer patients.
Hospice care is an option for anyone who is considered to be terminally ill, meaning they have a medical prognosis of a life expectancy of six months or less if the illness runs its normal course. It is understood that estimation of life expectancy is not always exact. Most insurers will continue to cover hospice care beyond six months as long as the patient continues to meet the criteria.
One of the most prevailing myths of hospice treatment is that hospice only serves those diagnosed with cancer. In fact, services are commonly provided to patient with: end stage cardiac, renal and liver, infectious diseases such as HIV, diseases of the nervous system and sensory organs including Alzheimer's, Parkinson's disease and multiple sclerosis, ALS, end stage CVA, as well as end stage COPD.

I have a terminal illness, but am still very active. To be eligible for hospice care, must I be bedridden?
Hospice care is appropriate for anyone with a terminal prognosis regardless of your physical condition. Many of the patients served through Joliet Area Community Hospice continue to lead active, productive and rewarding lives. Together, the patient, family and physician determine when hospices services should begin.

What is hospice's success rate in battling pain?
Very high. Using some combination of medicines, counseling, and therapies, most patients can attain a level of comfort that is acceptable to them.

My father is in a lot of pain due to cancer. How does hospice "manage pain"?
Joliet Area Community Hospice believes that emotional and spiritual pain are just as real and in need of attention as physical pain, so it can address each. Hospice nurses and doctors are up to date on the latest medications and devices for pain and symptom relief. In addition, the team can assist patients to be as mobile and self sufficient as they wish, and they are often joined by specialists schooled in music therapy, massage and diet counseling. Finally, various counselors, including clergy, are available to assist family members as well as patients in coping with social, emotional, and spiritual concerns.

Is hospice care expensive?
In Illinois, Medicare and Medicaid cover all services, medications, equipment, and supplies related to the terminal illness. There is no co-pay or deductible and physician visits are also covered at 100%. Many private insurances provide similar coverage. Joliet Area Community Hospice works with your insurer to determine what benefits are covered and then discusses this with you prior to your decision to receive hospice care.

If the patient is not covered by Medicare or any other health insurance, will hospice still provide care?
The first thing Joliet Area Community 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, we will provide services for anyone who cannot pay using money raised from the community through donations and memorials.

My father is receiving hospice care and has recently shown signs of recovery. Can he return to regular medical treatment?
If the patient's condition improves and the disease seems to be in remission, patients can be discharged from hospice and returned aggressive therapy or go on about their daily life. Hospice services can be iniated again at anytime if the discharged patient should later need to return to hospice care,

How many family members or friends does it take to care for a patient at home?
There is not a set number. One of the fist things the hospice team will do is to prepare an individualized care plan that will, among other things, address the amount of caregiving needed by the patient. Our staff is always accessible to answer medical questions, support, and teach caregivers 24 hours a day, 7 days a week.

My mom has expressed her wish to die at home and avoid being in the hospital again. 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 health care professionals, clergy or friends.

I've never done anything like this before. How difficult is caring for a dying love one at home?
It's never easy and sometimes can be quite hard. At the end of a long, progressive illness, nights especially can very long, lonely and scary. Joliet Area Community Hospice has staff available around the clock to consult by phone with the family and make night visits. We can also provide trained volunteers to provide "respite care," to give family members a break and/or provide companionship to the patient. Though sometimes difficult for family members and friends, one result is always certain - what comforts caregivers most is remembering that the care they provided for there loved one helped make each of their final days count.

I've heard that hospice is a place where the terminally ill go to die. Is this true?
Hospice is not a place, but a concept of care. More than 90% of hospice services provided in the U.S. are based in the home. This type of care allows families to be together when they need it most, making each day count. However, when care in the home is not an option, hospice care can be received in a skilled nursing facility, assisted or independent living facilities or in the Joliet Area Community Hospice Home.

Is there any special equipment or changes I have to make in my home before hospice care begins?
Joliet Area Community Hospice 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 progresses. In general, hospice will assist in any way it can to make home care as convenient, clean and safe as possible.

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 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 continuously. While family and friends do deliver most of the care, hospices provide visits by an interdisciplinary team including volunteers. This team provides assistance with care, teaching, support, and respite or time away for primary care givers.

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 own area of expertise. In addition, hospice provides medications, supplies, equipment, and inpatient services, related to the terminal illness, on an as-needed basis. Family or hired caregivers are provided training from the hospice team on the needs of the patient, use of the equipment and safety in the home.

Is caring for my husband at home the only place hospice can be delivered?
No. Although most of our hospice patient are in their personal residence, some patients live in nursing homes, assisted living or independent living facilities, and the Joliet Area Community Hospice Home. Hospice care can be provided “wherever that patient calls home.”

Will medication prevent me 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 and alert as possible. By constantly consulting with the patient, hospices have been very successful in reaching this goal. If it ever gets to the point where alertness may need to be sacrificed to manage pain, the hospice team will have a discussion with the patient and their family about what is the most important for them.

Is Joliet Area Community Hospice affiliated with any religious organization?
No. We are a free-standing, non-profit organization that is not affiliated with any religion or other medical organization in the community.

Is hospice care covered by insurance?
Hospice coverage is widely available and typically covers all services related to the hospice diagnosis. It is provided by Medicare, Medicaid, and by most private insurance providers. To be sure of coverage, families should, of course, check with their employee or health insurance provider.

Does hospice provide any help to the family after the patient dies?
Joliet Area Community 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 a death of a family member, a friend, or similar losses.