Frequently Asked Questions (FAQs) about Hospice Services
Our hospice care services are for adult and pediatric patients with a wide range of life-limiting illnesses. Below are some of the most common questions people ask us about our hospice services.
Frequently Asked Questions
What is hospice?
Hospice is a way to care for people who are terminally ill by focusing on pain relief and symptom management.
Instead of trying to cure the disease, hospice intends to provide comfort to the patient and the family. It provides support for emotional and spiritual end-of-life issues, and focuses on giving seriously ill patients and their loved ones meaningful time together.
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.
What’s the first step to getting started with hospice care?
Anyone can request a hospice evaluation at no cost. Sometimes the physician makes the 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.
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.
Where do patients receive hospice services?
Hospice services are typically brought to wherever the patient calls home.
Home could be 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.
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. VITAS 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
- 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.
- When is it time for hospice? Hospice services can begin when a doctor decides the patient’s life expectancy is six months or less.
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.
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
What are the qualifications for hospice care?
A patient is eligible to receive hospice services when their illness is terminal, meaning a physician has determined that they could die within six months if the disease continues as expected.
There are medical guidelines that accord with the patient’s disease and help a physician make a hospice referral.
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.
Can my doctor still be my doctor if I go on hospice?
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.
Will our family still have a say about our mother’s care if she’s on hospice?
Family input is important and is the driving force behind developing the most effective plan of care for your mother.
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.
What if my family member needs special equipment?
Hospice can provide the necessary equipment for the patient's care plan.
Hospice patients may need oxygen, a special lift for over the bed, a bedside commode, incontinence supplies or medications that are related to their terminal disease. Sometimes a hospital bed or Geri chair makes it easier for the family caregiver to attend to the patient at home.
Medications, supplies and “durable medical equipment” are part of the hospice team’s plan of care for the patient, and should be provided at no cost by the hospice. Because the family is part of the hospice team, they should be included in discussions of the plan of care and what the hospice patient needs to be comfortable.
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.
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.
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.
- My mother is already in a nursing home. Why would she need hospice services there? Hospice can provide additional support.
- Why would I put my child in hospice? Isn’t hospice for the very old? Hospice is for anyone with a terminal disease.
- 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.
- What is end-of-life care? Care near the end of life focuses on comfort rather than cure.
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.
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.
Palliative care 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.
What is respite care?
Respite care 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 (pronounced RESS-pit) 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.
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.
What if a patient’s health improves while on hospice care?
A hospice must discharge a patient whose underlying disease or condition is no longer considered terminal.
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.
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.
What is an advance directive?
An advance directive is a legal document that lets you direct in advance the care you will receive at some future time.
It is often important near the end of life, when many people are not able to speak for themselves. Completing an advance directive requires that you consider your options and make decisions now, while you are healthy, about what you do and do not want if you are seriously ill and unlikely to get better.
Advance directives include different forms and vary by state. They may be called Power of Attorney for Healthcare, Living Will, Five Wishes, Medical Power of Attorney, Healthcare Proxy, My Directives, Advance Care Planning, etc.
What happens after my loved one dies?
A member of your hospice team will answer questions and help make arrangements.
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.
- What about grief and other emotions? Does hospice address those? Hospices employ bereavement specialists to address all aspects of grief.