A close-up of a person holding the hand of an older adult woman.
Home hospice care can be a great comfort to people in the final stage of life and their families. Learn more about this type of care here. Photo Credit: iStock.com/Pharrel Wiliams

The decision to go on hospice and forgo curative treatment is a very tough, personal one. Many people think of hospice as giving up on life, but for millions of patients, hospice has brought huge relief and ensured that the time they had left was happier, calmer, more pain-free, and less scary. Hospice care can be provided in the home, an assisted living facility, a nursing home, a hospital, or a dedicated hospice facility. For most patients, the home is where they will be most relaxed, with a greater feeling of control and normalcy. They will also be able to stay closer to their family and friends. Here are the key things you need to know about hospice, with a special focus on home hospice care.

There are eligibility requirements to qualify for hospice care

Hospice care is available to patients with a terminal medical condition who have been given a prognosis of six months or less to live, with the disease running its natural course. Hospice is fully covered by Medicare and is available with Medicaid as well, though coverage varies by state. Most private insurance plans cover it, too, and they usually follow Medicare in terms of eligibility requirements and coverage. Medicare requires that a prognosis of six months or less be certified by two physicians — the patient’s own doctor and a hospice doctor. Eligibility requirements are the same whether hospice is provided in the home or a facility.

The patient must also sign a statement that they have opted for comfort care instead of treatments designed to cure their condition. Under Medicare, if the patient later decides to go off hospice and resume curative treatment, they may do so with the same coverage they had before. They have the option to return to hospice again if circumstances change.

You’ll have a team of care providers

Hospice providers give treatment to manage symptoms and relieve pain in order to maximize the patient’s comfort and bring calm to their lives. They also assist with personal care tasks and help them cope with the fear and stress of facing the end of life.

There are four levels of hospice care:

  • Routine care: The hospice team visits the patient’s home periodically as needed and is ready 24/7 to respond to any situation. 
  • Continuous care: In cases of acute attacks of pain or breathing difficulties, a nurse may stay in the home around the clock for up to three days until the situation is under control
  • General inpatient care: The patient receives around-the-clock care in a hospital, a nursing home, or a hospice inpatient unit (IPU) to treat severe symptoms. Some hospices have IPUs on-site, but most contract with hospitals that have beds reserved for hospice patients or special hospice units. Stays average about three to five days.
  • Respite care: In cases where a family caregiver can’t be available or needs a break, the patient can move temporarily into a facility for three to five days.

Home hospice care is provided by an interdisciplinary team that works together to meet the patient’s needs. The team is headed by a doctor called the hospice medical director. Other team members include: 

  • Hospice attending physician.
  • Registered nurse.
  • Pharmacist.
  • Home health aide.
  • Social worker.
  • Counselor or chaplain.

The registered nurse will typically visit the home once or twice a week for half-hour to hour-long visits to monitor the patient’s condition and administer medication and treatments. They coordinate with the attending physician, who will order any necessary changes along the way. The doctor works with the hospice pharmacist, who supplies all medications.

The hospice team will arrange the ordering and delivery of any medical equipment needed — such as hospital beds, wheelchairs and walkers, and oxygen equipment — and medical supplies like bandages and catheters.

The team also includes aides and volunteers who help with feeding, bathing, dressing, and grooming. They usually visit about three times a week. Homemaking services can help with things like housework, grocery shopping, preparing meals, or taking care of a pet. Physical and occupational therapists and speech-language pathologists are also available.

Patients can have a social worker visit to give counseling and, if necessary, advise the family on accessing charitable or government resources. A counselor or chaplain will be available to provide emotional and spiritual support if desired.

After the patient is gone, the hospice offers bereavement counseling for the family.

The patient’s caregivers and family members are usually considered part of the hospice team, and the nurses and health aides will work closely with them, giving guidance and support, and educating them on providing care between visits. A nurse will be available by phone 24/7 to answer questions and respond to emergencies.

Your doctors might change

Patients often form a special bond with their primary care physician or the specialist who has been with them through their illness. When they go into hospice, they may want them to continue to be involved in their care. If so, they can designate their doctor to be the hospice primary attending physician. Unless the doctor is part of their hospice team, they won’t be able to see them for anything related to their terminal condition without being billed. A hospice patient can still see their regular doctor for issues unrelated to their terminal illness.

Most (but not all) home hospice care costs are 100% covered 

Home hospice care is 100% covered under Medicare Part A with no copay or deductible, as long as the hospice provider is Medicare-approved (over 90% in the U.S. are). Medical equipment and supplies are covered. However, any outpatient medications for pain relief or symptom management will involve a copay of up to $5 per prescription. If respite care is needed, the patient may need to pay up to 5% of the cost, not exceeding that year’s inpatient hospital deductible. If hospice is provided in a facility, Medicare will not pay for room and board. Private plans may have additional deductibles and copays.

Nonprofit hospice providers usually work with patients with inadequate coverage to provide care at reduced rates or at no cost. They can also connect patients with charitable resources.

Any hospice care received by the patient must be provided by or arranged through the approved hospice care provider in order to be covered.

As long as a patient is receiving hospice benefits, their insurance will not cover any treatment or medication intended to prolong life or cure the illness. However, some treatments or interventions may be covered if they are used to relieve symptoms and improve quality of life. A patient will also still be covered for treatment of other illnesses or injuries unrelated to the terminal illness. For example, if a patient is dying of cancer, they could still be covered for treatment of a heart condition or setting a broken bone. Some hospices may refuse to perform CPR and may require the patient to sign a do-not-resuscitate order.

Home hospice care can continue as long as the patient lives

Although eligibility for hospice care is based on a prognosis of six months or less, it is possible to be on hospice for longer. During the first six months of hospice care, the patient’s condition is evaluated every 90 days to see if a prognosis of six months or less is still likely. If their care extends beyond six months, they will be evaluated every 60 days, with no set limit on evaluation periods. 

In some cases, a patient may be reevaluated to have better than a six-month prognosis, in which case they may be discharged from hospice care. If this happens, Medicare requires hospice providers to give patients advance notice of their discharge with the opportunity to appeal. If a patient is discharged, they can resume hospice care later on if a terminal prognosis is recertified. 

Approaching home hospice care can be a highly emotional time of life. If your or your loved one’s doctor starts talking about hospice, take your time to process it, and don’t be afraid to ask questions. This serious decision can be a source of help at an important time of life, but it’s a serious and personal decision for an individual and their family.