What is hospice care?
Hospice care provides medical care, pain management, and emotional and spiritual support for people who are in the last stages of a terminal illness. The goal of hospice care is to help people who are approaching the end of life have peace, comfort and dignity. Hospice care is provided by a specially-trained team that includes doctors, nurses, social workers, spiritual counselors, home health aides, therapists and trained volunteers. This team works together to meet the physical, emotional and spiritual needs of the person with a life-limiting illness as well as their family members. Hospice care can be provided at home, in freestanding hospice centers, hospitals, nursing homes and other long-term care facilities.
When is it time for hospice?
One of the most difficult decisions for families is determining when hospice care should begin for a loved one with a terminal illness. Many people think hospice is only for the very end of life, but it is most beneficial when started earlier. Here are some signs that indicate a person could benefit from hospice services:
- The person’s condition is steadily worsening.
- Curative treatments are no longer working.
- The person has stopped treatments to prolong life.
- Pain or symptoms are becoming difficult to manage.
- The person has frequent trips to the emergency room or hospitalizations.
- Activities of daily living like eating, bathing, dressing are becoming difficult.
- The person can no longer stay alone safely.
The most important factor is whether the doctor would be surprised if the person passed away within 6 months. Hospice criteria usually require a doctor’s estimate that a person has 6 months or less to live if the disease follows its normal course. However, some hospice programs are flexible with this requirement, especially for people with difficult-to-predict illnesses like dementia.
Why choose hospice?
Many families feel unsure about starting hospice or feel like choosing it means giving up hope. However, hospice provides comprehensive comfort care and has many benefits for people with a terminal diagnosis. Reasons to choose hospice include:
- Expert pain and symptom management to provide comfort.
- Emotional and spiritual support through counseling and chaplain services.
- Practical help and education for caregivers.
- Availability 24/7 if a crisis occurs.
- Respite care options to give family caregivers a break.
- Bereavement services for family after the loss.
- No concerns about healthcare costs since hospice is covered by Medicare, Medicaid and most private insurance.
Hospice allows the focus to shift from curative treatments to quality of life and time spent with loved ones. Many families ultimately express gratitude for the quality time hospice allowed them to have together before their loved one passed away.
Who is eligible for hospice?
To qualify for hospice care under the Medicare hospice benefit, a person must:
- Have a life expectancy of 6 months or less, if the disease runs its normal course, as certified by the doctor.
- Sign a statement choosing hospice care instead of curative treatment for the terminal illness.
- Receive care from a Medicare-certified hospice program.
- Have an allowed terminal diagnosis such as cancer, dementia, heart or lung disease, HIV/AIDS, kidney disease or other progressive conditions.
Some hospice programs have more flexibility with diagnosis and life expectancy requirements for people who might benefit from services but do not technically meet guidelines. This is especially true for hospice based in hospitals and skilled nursing facilities. All hospice programs provide services regardless of a person’s ability to pay.
When should hospice be called?
Given how much hospice can help in the final months of life, most experts recommend involving hospice earlier rather than later. The median length of service in hospice is only about 18 days. However, when started earlier, hospice can provide care for weeks to months. This allows time to fully utilize comfort, counseling, instruction and other services hospice offers.
Ideally, hospice should be consulted:
- As soon as the person is diagnosed with a life-limiting illness.
- When curative treatment options are limited or declining.
- When hospitalizations and emergency room visits increase.
- When symptoms are becoming difficult to control at home.
- When a caregiver feels overwhelmed, stressed or depressed.
Getting acquainted with hospice early ensures the staff understands the person’s preferences for end-of-life care while they are still able. It allows hospice time to walk alongside during the final season of life. Call sooner rather than later for maximum benefit.
How is a loved one admitted to hospice?
The process for hospice admission includes:
- The patient’s doctor determines eligibility and certifies the life expectancy prognosis.
- Hospice staff meet with the patient, family and doctor to assess needs and develop a care plan.
- The patient or power of attorney signs paperwork to elect hospice instead of further curative treatment.
- Hospice staff educate on what services will be provided and available.
- Equipment like hospital beds, walkers, or wheelchairs are ordered if needed.
- Comfort medications, medical supplies and other hospice benefits begin.
- Bereavement services for family members are discussed.
The patient, family and doctor work together with hospice staff to develop a customized care plan based on the patient’s condition, needs and preferences. This care plan guides the services hospice will provide.
What services does hospice provide?
Hospice provides a full spectrum of services tailored to each patient’s unique needs. This includes:
Pain and symptom management
Around-the-clock on-call nursing is available to help deal with pain, breathing issues, nausea and other concerns. Hospice doctors can prescribe medications to alleviate pain and uncomfortable symptoms. Therapies like massage and music therapy often assist with discomfort as well.
Medical equipment and supplies
Hospice provides medical equipment such as hospital beds, oxygen, walkers, wheelchairs and more based on needs. Medications, wound dressings and therapies related to the terminal diagnosis are also covered.
For patients that need frequent nursing care, hospice nurses provide services like wound care, medication management and assessments. Nurses coordinate closely with the hospice doctor to provide specialized medical care aimed at providing comfort.
Home health aides
Hospice aides assist with bathing, grooming, light housekeeping, meal preparation and running errands. Aides provide hands-on personal care and hygiene services.
Social work and counseling
Social workers help the patient and family cope with emotional and practical challenges. Counseling provides support for anticipatory grief, anxiety about death, family dynamics and other struggles faced when end of life nears.
Spiritual care and counseling
Chaplains and spiritual counselors are available to address fears, spiritual distress, loss of faith and other concerns. They can provide comfort through life review, prayer, meditation and ceremonies.
Grief support is provided to surviving family and friends through counseling, programs and therapy. Bereavement services help process grief and are often still available for a year after the patient’s passing.
Hospice volunteers provide respite for family caregivers, companionship and help with light tasks like meal prep, errands and medication reminders. Volunteers act as an extra pair of hands when needed.
For exhausted family caregivers, respite care offers a short inpatient stay so the usual caregiver can rest. Respite care can be provided in the home or at inpatient hospice facilities for several days.
Since illness can affect appetite and nutrition, hospice brings in dietitians to provide dietary recommendations and suggest better tolerated foods. The goal is to prevent weight loss and meet nutritional needs.
Where is hospice care provided?
Hospice care mainly takes place wherever the patient calls home, whether that is a private residence, nursing home, assisted living facility or group home. It can also be provided in the following settings:
- Hospitals – For symptom control in a medical facility before a patient is stable enough to be discharged home
- Hospice inpatient facilities – For short-term respite care and pain and symptom management that can’t be handled at home
- Skilled nursing facilities – If this is the patient’s place of residence when they elect hospice
The majority of hospice care is provided at home where the patient is most comfortable and familiar with their surroundings. Care can be transferred to an inpatient setting if symptoms become too difficult to manage at home or the family caregiver needs respite.
What does Medicare cover for hospice?
The Medicare hospice benefit covers the following services related to the terminal diagnosis:
- Nursing care
- Medical equipment and supplies
- Medications for pain and symptom control
- Short-term inpatient stays for respite or symptom crises
- Physical, speech and occupational therapies
- Home health aide and homemaker services
- Social work and counseling
- Dietary counseling
- Spiritual care
- Volunteer assistance
- Bereavement services
There are normally no out-of-pocket costs for hospice care covered under Medicare Part A. Medicare reimburses the hospice provider an all-inclusive daily rate for care per patient.
What out-of-pocket expenses are there with hospice?
Hospice care is designed to minimize out-of-pocket expenses related to the terminal diagnosis as much as possible. However, a few costs patients and families may need to cover include:
- Prescription medications not for symptom control or relief
- Treatments unrelated to the terminal illness
- Room and board in assisted living or long-term care facilities
- Emergencies or hospitalizations for conditions other than the terminal illness
- In-home caregivers beyond what hospice provides
Thankfully, these ancillary expenses are usually minimal. Most medications, medical needs and therapies related to the terminal illness are fully covered by hospice. Out-of-pocket costs are much lower with hospice care than aggressive end-of-life treatments.
How long can a patient receive hospice care?
Under the Medicare hospice benefit guidelines, patients can receive hospice services for two 90 day benefit periods followed by an unlimited number of 60 day periods. At the start of each benefit period, the hospice doctor must recertify that the patient still has a life expectancy of 6 months or less. There are no limits on how long hospice can be provided if recertified.
Some private insurances have different requirements for length of services, such as only covering 6 months of hospice care. Policies vary, so families should check with the insurance provider about time limitations and requirements.
When are hospice services stopped?
There are a few circumstances where the hospice benefit will be stopped, including:
- The patient’s condition improves and life expectancy extends beyond 6 months
- The patient revokes the hospice election and returns to aggressive curative treatment
- The doctor can no longer certify the 6-month prognosis
- The patient moves out of the hospice’s service area
- Medicare or insurance hospice time benefits expire
Except for insurance reasons, the election of hospice care can be cancelled at any time if the patient changes their mind or their condition improves. Hospice staff will help make arrangements for continued care if services need to end.
How is the date of death determined?
No one can predict exactly when death will occur, which makes a timeline for hospice difficult. The 6 month prognosis is based on the usual disease progression and anticipated complications. However, dying is a unique journey for each person.
Factors that indicate death may be within days or weeks include:
- Minimal oral intake of food and fluids
- Difficulty with walking and self-care activities
- Increased time sleeping and difficulty awakening
- Confusion about time and place
- Limited ability to communicate clearly
- Increased difficulty controlling pain and other symptoms
As the end nears, the hospice team works closely with families to prepare them for logistics following a loved one’s death. Focus remains on comfort until life concludes naturally.
Determining when hospice is appropriate can be difficult for families facing terminal illness. The key considerations are worsening symptoms, limited treatment options and a doctor’s estimate that life expectancy is 6 months or less. Calling on hospice early ensuresmaximum services and benefits. Though saying goodbye is painful, hospice provides gentle care, comfort and support through life’s final chapter.