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.
Once a patient chooses hospice care, can he or she continue to receive care from their primary physician?
Hospice reinforces the patient-primary care physician relationship by advocating either office or home visits, according to the physician's preference. Advocate Hospice works 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?
Hospice will assign one of our physicians, medical director or assist you in locating a physician near you who can also make a home visit.
What does the hospice admission process involve?
One of the first things Advocate Hospice program will do is contact the patient's physician to make sure that he or she agrees that hospice care is appropriate for this patient at any time. (Most hospices have medical staff available to help patients who have no physician.) Then one of our Liaisons 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 been aggressively treating 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 Advocate Hospice continue to lead active, productive and rewarding lives. Together, the patient, family and physician determine when hospices services should begin.
What if my physician doesn't know about hospice?
Most physicians know about hospice. If your physician wants more information about hospice, it is available from the National Council of Hospice Professionals Physician Section, Advocate Hospice Medical Directors or by calling Advocate Hospice at 1.800.564.2025.
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"?
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, physical and occupational therapists 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.
Is hospice care expensive?
In Illinois, Medicare and Medicaid cover all services, medications, equipment, and supplies patient-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. Advocate 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 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 for anyone who cannot pay using money raised from the community or from memorial or foundation gifts.
My father is receiving hospice care and has recently shown signs of recovery. Can he return to regular medical treatment?
Certainly. 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. If the discharged patient should later need to return to hospice care, Medicare and most private insurance will allow them 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. Hospice staff regularly and are always are accessible to answer medical questions, support, and teach caregivers. At Advocate Hospice, staff is on call 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. So, hospices have staff available around the clock to consult by phone with the family and make night visits. To repeat: Hospice 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, inpatient care can be available through a skilled nursing facility or designated hospital.
Is there any special equipment or changes I have to make in my home before hospice care begins?
Your hospice provider 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 of people 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 hospital services, related to the terminal illness, and additional helpers in the home, on an as-needed basis.
Does hospice do anything to make death come sooner?
Hospice neither hastens nor postpones dying. Just as doctors and midwives lend support and expertise during the time of childbirth, hospice provides its presence and specialized knowledge during the dying process.
Is caring for my husband at home the only place hospice 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.
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.
Is hospice affiliated with any religious organization?
No. While some churches and religious groups have started hospices (sometimes in connection with their hospital), 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 and typically covers all services related to the hospice diagnosis. It is provided by Medicare nationwide, by Medicaid in 39 states, 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?
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.