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What is hospice?
Hospice is a way to care for people who are terminally ill by focusing on pain relief and symptom management, as well as emotional and spiritual end-of-life issues, instead of trying to cure the disease.
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What does it mean when it's time to call hospice?
Calling hospice means deciding that the patient and family no longer want to pursue curative care. Generally, a physician determines that a patient's life expectancy is six months or less; most medical treatments and interventions are no longer effective, will not cure the disease and/or will prolong suffering. Calling hospice takes a patient's care away from disease specialists and surgeons and gives it to an interdisciplinary team trained in comfort care, pain relief, psychosocial support and quality of life at the end of life.
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What's the first step to getting started with hospice care?
Anyone can request a hospice evaluation at no cost. Sometimes the physician makes a referral or provides several options and lets the patient/family decide. The physician must certify to the hospice provider that the patient is eligible and has a prognosis of 6 months or less. When a referral is made, the hospice provider makes an appointment (the same day or on a date convenient for the family) to meet with the patient and family. The admissions nurse evaluates the patient, answers the family's questions and creates a plan of care that reflects the patient/family's wishes. If the discussion goes well and the family is ready to decide, they sign admissions paperwork and the hospice team begins to visit.
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Who is on the hospice team? Who is responsible for care?
Hospice patients receive services from an "interdisciplinary" team, meaning members come from different disciplines or fields. They may include a physician, registered nurse, hospice aide, social worker, chaplain, bereavement services manager, volunteer and other healthcare professionals.
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How often does the hospice nurse or doctor visit?
The hospice nurse creates a plan of care with the patient's and family's input, designed to meet the patient's needs. This determines the frequency of visits by the doctor, nurse and others on the hospice team.
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Can my doctor still be my doctor if I go on hospice?
Yes. Hospice physicians and team members work with your doctor to ensure your clinical and emotional needs are being met and that your care is being carried out appropriately. Your doctor chooses his or her level of participation in your care.
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Will our family still have a say about our mother's care if she's on hospice?
Yes. Family input is important and is the driving force behind developing the most effective plan of care for your mother.
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What if the hospice patient has special needs?
The hospice plan of care is individualized to meet each patient's needs. If special equipment (e.g., wheelchair, lift, trapeze bar, etc.) or therapies (e.g., respiratory therapy, physical therapy, etc.) are needed, the hospice provider offers these as part of its services. Perhaps the need is for a certain religious practice or person, a family or cultural tradition, a language other than English or another unique circumstance. Hospice providers address each patient's needs.
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Who will talk to me about my loved one once we have hospice? Who will keep us informed?
You will always be kept up-to-date on your loved one's condition. The primary hospice nurse can answer any questions you have, tell you about your loved one's care and progress, and prepare you for what to expect.
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If I have home health, why do I need hospice care?
Hospice offers many services home health care does not, such as prescriptions, medical equipment and visits from an interdisciplinary healthcare staff. Typically, the goal of home healthcare is to help the patient become more independent, and visits decrease in frequency as the patient's condition improves. The goal of hospice is to keep the patient comfortable as symptoms increase. Hospice services change to fit the needs of the patient.
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My mother is already in a nursing home. Why would she need hospice services there?
Nursing homes focus on routine daily care and rehabilitation. Nursing home residents who receive hospice services get additional, customized support determined by their plan of care, which focuses on the physical, emotional and spiritual end-of-life needs of patients and their families.
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Why would I put my child in hospice? Isn't hospice for the very old?
Hospice is for anyone with a terminal disease. From infants to adult through old age, hospice offers quality of life near the end of life as well as support for those who are caring for the patient.
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Will hospice care for my dad 24/7? Will I still need to take care of him?
Yes, you will always be his primary caregiver. Hospice can supplement that care to help share the responsibility of caregiving with regular visits and education from the hospice care team.
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What is "comfort care?"
Comfort care focuses on comfort and relief from symptoms as opposed to curing or treating the disease. Comfort care addresses all the needs of the patient and family-physical, emotional and spiritual.
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What is palliative care?
Palliative care is supportive care that provides relief from the symptoms, physical stress and mental stress of a serious or life-limiting illness at any stage of the illness, and it can be provided concurrently with curative therapies and treatments. Palliative medicine specialists control pain, manage symptoms, assist with difficult medical decisions about various treatments, coordinate care with other healthcare professionals, and craft a care plan based on the patient's wishes and preferences. Palliative care can be provided at home or in other settings, including hospitals and skilled nursing facilities. A palliative care team may include the patient and caregiver(s), a doctor, nurse, pharmacist, dietitian, physical or occupational therapist, social worker, chaplain and other healthcare professionals as needed.
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What is respite care?
Respite care (pronounced RESS-pit) gives a break, or "respite," to family members and caregivers who are caring for a loved one receiving hospice services. A daughter who cares for a mother with Alzheimer's disease, for example, might need a few days off to travel, attend to other family members or take a break from the 24/7 stress of caregiving. Hospice respite care is mandated by the Medicare hospice benefit for any beneficiary whose caregiver needs a break of up to five consecutive days and nights. It places a hospice patient in a facility that provides 24-hour care (e.g., nursing home, skilled nursing facility, hospital or hospice unit) without having to meet the criteria for traditional inpatient care or symptom management.
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I don't want my wife to die in our home. Can she have inpatient care instead?
Your preference for inpatient care should be discussed with the hospice representative who evaluates your wife or with the hospice team if she is already a hospice patient. Every patient and every situation is different.
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Can you come to talk to my sister about hospice but not mention cancer, death or dying? She doesn't know.
Hospice professionals are specially trained to discuss sensitive matters with patients and their loved ones. Usually, a hospice representative will begin the conversation by asking the patient what the doctor has said and what the patient understands about his or her condition. The answer to these questions will determine the words the representative will use.
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What if a patient's health improves while on hospice care?
Patients often improve with hospice services, because the focus of their care shifts to comfort, pain relief, symptom management and quality of life. They still have a terminal illness, but their symptoms are so improved that they no longer qualify for hospice services. A hospice must discharge a patient whose underlying disease or condition is no longer considered terminal. Patients can revoke hospice care for any reason at any time. Patients can also return to hospice at any time, as long as their doctor re-certifies their eligibility.
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What happens after my loved one dies?
Ideally, a member of your hospice team will be at the bedside at the time of death, able to explain the stages of death, make necessary phone calls, prepare the body and support the family in the first few hours. He or she will arrange for the body to be removed or, if the family would like to wait, perhaps until a family member arrives, that can be arranged as well. If a member of the team is not present at the death, he or she will arrive as soon as you call the hospice provider.
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What about grief and other emotions? Does hospice address those?
Hospices employ bereavement specialists to address all aspects of grief, including anticipatory grief and the grief process after death. Hospices provide bereavement services for the family for up to 13 months after the death.
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Who pays for hospice? Is it covered by my insurance? Medicare? Medicaid?
Part A of Medicare covers 100% of hospice services. Generally, most hospices also work with Medicaid, the Veterans Administration and private insurance companies.
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If I don't have insurance, can I still receive hospice services?
Yes. If you don't have insurance coverage, the hospice admissions staff will work with you to determine financial responsibility and self-payments and to find out if you are eligible for other benefits that could help pay for services.
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If Medicare covers my hospice services, will I lose my other Medicare coverage?
No. If you need hospitalization for any reason unrelated to the terminal disease, traditional Medicare will be used. You can discontinue the Medicare hospice benefit at any time if you want treatment different from what hospice provides. You may also resume the Medicare hospice benefit at any time.
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Can I have hospice and also keep my HMO?
Yes. Hospice will provide care related to the primary diagnosis, while the HMO can take care of unrelated healthcare issues.
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Is there a fee for a hospice consultation?
Hospices do not charge fees for eligibility consultations.
Get a hospice consultation: Request information online or call 973-977-2223
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Where do patients receive hospice services?
Hospice services are typically brought to wherever the patient calls home-a private residence, assisted living community or nursing home. Patients can also receive hospice services while in the hospital, or in an inpatient hospice unit.
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What are hospice "levels of care?"
Levels of care are specific types of hospice care to address different needs of patients and families. Medicare requires all hospice providers to offer four distinct levels of care. They are:
- Routine hospice care in the home
- Shifts of acute symptom management in the home when medically necessary Hospice Agency of NJ calls this Intensive Comfort Care®, it can also be called "continuous care."
- Round-the-clock inpatient care when symptoms cannot be managed at home
- Respite inpatient care for the patient when the family caregiver is away 1−5 days
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If hospice is for dying, does choosing a hospice mean giving up on my loved one?
No. When treatment options for a disease have been exhausted or no longer work, hospice provides a way for people to live in comfort, peace and dignity without curative care. Hospice isn't about giving up, but about improving the quality of the patient's life by being free of pain, surrounded by family and in the comfort of home.
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When is it time for hospice?
Patients should consider hospice services when medical treatments can no longer cure their disease and/or symptom burden outweighs the benefits of treatment. Hospice services can begin when a doctor decides the patient's life expectancy is six months or less.
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What are the signs that hospice is right for heart disease patients?
- The patient has advanced congestive heart failure or advanced coronary disease with frequent episodes of angina
- The patient has an abnormal heart due to disease and suffers from significant symptoms of fatigue, shortness of breath or functional decline
- The patient has received optimal treatment for his/her disease and is not a candidate for further surgical or medical intervention
- The patient has received optimal treatment for his/her disease and has chosen not to pursue advanced specialized treatment
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What are the signs that hospice is right for Alzheimer's and dementia patients?
- The patient can say only a few words
- The patient can no longer walk and may be bed-bound
- The patient is totally dependent on others for eating, dressing and grooming
- The patient shows signs of severe anxiety
- The patient has been through several years of decline
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Why would an Alzheimer's patient get hospice care?
At the end of their lives, Alzheimer's patients present several challenges to their caregivers. When these patients are in the last stages of life, hospice can relieve some of the burden-physically, emotionally and spiritually-for caregivers as well as help the patient's end-of-life experience be comfortable and dignified.
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What are the signs that hospice is right for ALS patients?
- Progression* from independent ambulation to wheelchair or bed-bound
- Progression* from normal to barely intelligible or unintelligible speech
- Progression* from normal to pureed diet
- Progression* from independence in most or all activities of daily living (e.g., toileting, feeding, dressing, etc.) to needing major assistance with these tasks
- Choice to forego feeding tubes for hydration and nutrition and supportive ventilation for breathing
* Progression is defined as the development of severe neurologic disability over a 12-month period.
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What are the signs that hospice is right for ALS patients?
- Progression* from independent ambulation to wheelchair or bed-bound
- Progression* from normal to barely intelligible or unintelligible speech
- Progression* from normal to pureed diet
- Progression* from independence in most or all activities of daily living (e.g., toileting, feeding, dressing, etc.) to needing major assistance with these tasks
- Choice to forego feeding tubes for hydration and nutrition and supportive ventilation for breathing
* Progression is defined as the development of severe neurologic disability over a 12-month period.
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What are the signs that hospice is right for cancer patients?
- The patient is rapidly weakening and the cancer is progressing
- The treatment intervention is not fully effective
- The burden of treatment on the patient and family outweighs the benefits
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Can a patient receive chemotherapy and hospice services at the same time?
If the chemotherapy were being used to attempt to cure the cancer, hospice would be inappropriate. However, a patient receiving hospice services may receive chemo for reasons of comfort and quality of life; for example, to shrink a tumor that is pressing on an organ.
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What are the signs that hospice is right for COPD patients?
- The patient has made one or more trips to the emergency department every three months due to infection or respiratory failure
- The patient spends most of his/her days at home
- The patient has endured repeated hospitalizations (i.e., one or more in three months) and wants to remain out of the hospital
- The patient no longer wishes to be intubated
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What are the signs that hospice is right for Parkinson's Disease patients?
- Continuous decline in function
- Coma
- Persistent vegetative state
- Severely reduced level of consciousness
- A significant compromise in breathing and/or swallowing
- Any of the progressions under "ALS" above
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What is the difference between diagnosis and prognosis?
A diagnosis is when the cause of the illness is identified (e.g., the common cold, pneumonia, lung cancer, etc.). A prognosis is a prediction about how the illness will develop. In the case of people who are terminally ill, the prognosis is often the physician's estimate of how long the illness will take to run its course before the patient dies.
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Are there signs that a patient might be ready for hospice services?
When the burden of treatment outweighs the benefits and/or the patient has had multiple hospitalizations over the last several months, he or she might be ready for hospice. Other indications include:
- Repeat trips to the emergency department
- Unrelieved pain
- Frequent infections
- Sudden or progressive decline in physical functioning and eating
- Weight loss/difficulty swallowing
- Shortness of breath/oxygen dependence
