What is a Hospice?
A hospice is a facility or program designed to provide a caring environment for meeting the physical and emotional needs of the terminally ill. It is typically the end-of-life care provided by health professionals and volunteers for patients with life-threatening illness.
Typically, hospice patients are expected to live six months or less, so hospices focus on comfort, not curing. In most cases, care is provided in the patient's home. It can also take place in other environments, such as at a hospice center, nursing home, assisted living facility, in a hospital or in a skilled nursing facility.
Hospice care is the defining model of compassionate care for people facing a life-limiting illness or injury when curative treatments result in extreme side effects or are not effective. It involves a team approach to providing comfort, expert medical attention, pain management, as well as emotional and spiritual support tailored to patients' needs and wishes. At the center of the hospice care philosophy is the belief that each of us has the right to be pain-free, and to live and die with dignity.
In most cases, an interdisciplinary healthcare team manages hospice care. Many interacting disciplines work together to care for the patient: doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers.
This team provides complete palliative care aimed at easing symptoms and offering social, emotional, and spiritual support.
Members of the team can include:
- Registered nurses: Monitor symptoms and medication, and help educate both the patient and the family about what's happening. The nurse is also the link between the patient, the family, and the physician.
- Social Workers: Counsels and advises the patient and family members, and acts as the patient's community advocate, making sure the patients have access to the resources they need.
- Physical, Occupational, and Speech Therapists: Help the patient develop new ways to perform tasks that may have become difficult due to illness, such as walking, dressing, or eating.
- Spiritual volunteers such as members of the clergy or a chaplain: Offer spiritual support to the patient and family.
- Home health aides: Provide personal care such as bathing, shaving, and nail care. Homemakers may be available for light housekeeping and meal preparation.
- Volunteers: Provide companionship for the patient and offer respite for the caregivers. Volunteers are at the heart of hospice care and may be health professionals or members of the general public.
- Resource Assistance: Help with resources including financial aid, funeral arrangements and Healthcare Power of Attorney.
Coordination of Care
The interdisciplinary team coordinates and supervises care seven days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. Services may include the in-patient facility, the home care agency, doctors, and other community professionals, such as pharmacists, therapists, clergy, and funeral directors.
Palliative Care (Pain and Symptom control)
The goal of palliative care is to help make the patient comfortable while allowing him or her to stay in control. This means managing side effects as best as possible to remain as free of pain and symptoms as possible, yet still alert enough to make important decisions.
Since spiritual needs and religious beliefs differ from person to person, spiritual care is customized for each patient.
Home care and In-patient care
Although hospice care can be done in the home, patients may need to be admitted to a hospital, extended-care facility, or a hospice in-patient facility. Sometimes medical intervention will be recommended to ease the dying process (for example, an IV drip with pain medication), requiring round-the-clock nursing care. The hospice can arrange for in-patient care and typically stay involved in the patient's treatment.
At some point during hospice care, family and caregivers may need some time away from intense care giving and many hospice services offer respite care, which is often over a five-day period. During this time, the patient will be cared for either in the hospice facility or in contracted beds in nursing homes or hospitals.
Hospice care nurses can help lead regularly scheduled family conferences to help family members stay informed about the patient’s condition and to manage expectations. Family conferences also give the patient and the family a chance to share feelings, to talk about expectations, and to learn about death and the process of dying. Family members can find great support and stress relief through family conferences.
Bereavement is the time of mourning after a loss and the hospice care team works with surviving family members to help them through the grieving process. A trained volunteer, clergy member, or professional counselor typically provides support through visits, phone calls, and/or letter contact, as well as through support groups. The hospice team can refer family members and friends if needed. Bereavement services are often provided for up to a year after the patient's death.
Hospice Staff Support
Hospice care typically involves kind and caring staff members who communicate well, are good listeners, and are interested in working with families who are dealing with a life-threatening illness. Yet, because the work can be emotionally draining, it is very important that support is available to help staff deal with their own grief and stress. Ongoing education about the end of life process is an important part of staff support.
Members of the hospice team may teach family or caregivers how to provide care, such as how to turn a bedridden patient.
In most states, many sources such as Medicare, Medicaid, the Department of Veterans Affairs, HMOs, most private insurance plans, and other managed care organizations pay for hospice care. Community contributions, memorial donations, and foundation gifts allow many hospices to provide free services to patients who cannot afford to pay while other programs charge patients according to their ability to pay. To get payment from Medicare, the agency must be approved by Medicare to provide hospice services, and more than 90% of hospices in the United States are certified by Medicare.
Medicare Hospice Benefit
The Medicare Hospice Benefit is covered under Medicare Part A (hospital insurance). Eighty percent of people who use hospice care are over the age of 65 and are thus entitled to the services offered by the Medicare Hospice Benefit. Medicare beneficiaries who choose hospice care receive the full scope of medical and support services for their life-limiting illness. Hospice care also supports the family and loved ones of the person through a variety of services.
To qualify for the Medicare hospice benefit, a doctor and the hospice medical director must certify that the patient has less than six months to live given the disease runs its normal course. The doctor must re-certify the individual at the beginning of each benefit period (two periods of 90 days each, then an unlimited number of 60-day periods). The patient must sign a statement that says he or she understands the nature of the illness and of hospice care, and that he or she wants to be admitted to hospice. A family member may sign the statement if the patient is unable to do so.
By signing the statement, the patient declines Medicare Part A and instead chooses the Medicare Hospice Benefit for all care related to his or her illness. However, the patient can still receive Medicare benefits for other illnesses.
In 1986, legislation was passed allowing states to develop coverage for hospice programs. Most states do have a Medicaid hospice benefit, which is patterned after the Medicare Hospice Benefit. Read more about the Hospice Medicaid coverage.
Most private insurance companies include hospice care as a benefit. Be sure to ask about your insurance coverage, not only for hospice, but also for home care.
If insurance coverage is not available or is not enough to cover the costs, hospice providers can be hired and paid for out of pocket. Most hospices will provide services without charge if patients have limited or no financial resources.
Questions to Ask When Selecting a Hospice Provider
People are sometimes reluctant to question doctors or other medical professionals about their care. A few key questions to should ask when selecting a hospice team.
- Is the hospice accredited (certified and licensed) by a nationally recognized group, such as the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)? The JCAHO is an independent, nonprofit organization that evaluates and accredits healthcare organizations and programs.
- Is this hospice provider Medicare certified?
- Is the hospice provider licensed by the state, if required by your state?
- Does the agency have written statements outlining services, eligibility rules, costs and payment procedures, employee job descriptions, and malpractice and liability insurance? Don’t forget to request brochures or other available information about their services.
- How many years has the agency been serving your community? Can the agency provide references from professionals -- such as a hospital or community social workers -- who have used this agency? Ask for names and telephone numbers. A good agency will give you these if you ask for them. Talk with the staff and other families who have used this hospice provider's services.
- Are there references on file for the home care staff? Ask how many references the agency requires for each staff member (two or more should be required). Does the agency train, supervise, and monitor its caregivers? Ask how often the agency sends a supervisor to the patient's home to review the care being administered to the patient. Ask whether the caregivers are licensed and bonded.
- Does the hospice have a 24-hour telephone number you can call when you have questions or complaints? How does the hospice respond to calls?
- How well does the hospice work with each patient and family to apply policies or negotiate differences? If the hospice imposes conditions that do not feel comfortable, it may be a sign that it is not a good fit for you or your family member.
- Does the agency create a plan of care for each new patient? Is the plan carefully and professionally developed with input from you and your family? Is the plan of care written out and are copies given to everyone involved? Check to see if the plan lists specific duties, work hours/days, and the name and telephone number of the supervisor in charge. Is the care plan updated as your needs change? Ask if you can look at a sample care plan. This is important because it helps dictate the type of care your loved one will receive.
- Does the hospice require you to have a primary caregiver as a condition of admission? What responsibilities are expected of the primary caregiver? Will someone need to be with you all the time? What help can the hospice offer to organize and assist the family's efforts? Can the hospice fill in around job schedules, travel plans, or other responsibilities?
- Does a nurse, social worker, or therapist talk to you about your options and evaluate the types of services you may need? Do they come to your home or is this discussed over the phone? Does it include input from your family doctor and/or other professionals already involved in the loved one's care?
- How does the agency handle payment and billing? Be sure to get all financial arrangements -- costs, payment procedures, and billing -- in writing and up front. Read the agreement carefully before signing. Be sure to keep a copy. What resources does the agency provide to help you find financial assistance if it is needed? Are standard payment plan options available?
- Does the agency have an emergency plan in place in case of a power failure or natural disaster? In case of an emergency, you need to know whether the agency can still deliver its services to your home.
- How quickly can the hospice start services? Do they offer specialized services such as rehabilitation therapists, pharmacists, dietitians, or family counselors when these could improve your loved ones comfort? If needed, do they provide medical equipment or other items that might improve your loved one's quality of life? What are the provider's geographic service boundaries?
- During your first visit, be sure to talk about all of the treatments the patient is currently getting. Some hospices will not cover some treatments such as: dialysis, total parenteral nutrition (TPN, or intravenous feedings), blood transfusions, or certain drugs. But some hospices, most often the bigger ones, do offer open-access care, which allows for the patient to add hospice care to their current medical treatment; although this is not always an option.
- What are the provider's inpatient care policies? Where is this care provided? What are the requirements for an inpatient admission? How long can the patient stay? What happens if the patient no longer needs inpatient care but cannot go home? Can you tour the inpatient unit or residential facility? Which hospitals contract with the hospice for inpatient care? What kind of follow-up does the hospice provide for inpatients?
- Does the agency explain your rights and responsibilities as a patient? Ask to see a copy of the agency's patient's rights and responsibilities information.
- Medicare Hospice Benefits Overview(CMS.gov)
- National Hospice and Palliative Care Organization
- Caring Connections
- Join VNAA