Frequently Asked Questions (FAQs) about Hospice Services

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.

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.

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.

They may include a physician, registered nurse, hospice aide, social worker, chaplain, bereavement services manager, volunteer and other healthcare professionals.

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.

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 to the patient’s bedside for up to 24 hours/day per Medicare guidelines. 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

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.

Patients should consider hospice services when medical treatments can no longer cure their disease and/or symptom burden outweighs the benefits of treatment.

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.

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

There are medical guidelines that accord with the patient’s disease and help a physician make a hospice referral.

This determines the frequency of visits by the doctor, nurse and others on the hospice team.

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.

Family input is important and is the driving force behind developing the most effective plan of care for your mother.

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.

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.

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.

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.

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.

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.

Hospice can supplement that care to help share the responsibility of caregiving with regular visits and education from the hospice care team.

It is care that accepts that the patient is declining and that attempts to reverse the course of their terminal illness would be futile or that side effects would outweigh any benefit. The patient is terminally ill and chooses comfort care, which is also known as palliative care.

Comfort care addresses all the needs of the patient and family—physical, emotional and spiritual.

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.

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.

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.

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.

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.

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.

Types of grief include anticipatory grief and the grief process after death. Hospices provide bereavement services for the family for up to 13 months after the death.