Frequently Asked Questions
1) When is the right time to ask about hospice?
Now is the best time to learn more about hospice and ask questions about what to expect from hospice services. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice is needed. By having these discussions in advance, patients are not forced into uncomfortable situations. Instead, patients can make an educated decision that includes the advice and input of family members and loved ones.
2) How does hospice care begin?
Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. Often a hospice program representative will make an effort to visit the patient within 48 hours of that referral, providing the visit meets the needs and schedule of the patient and family/primary caregiver. Usually, hospice care is ready to begin within a day or two of the referral. However, in urgent situations, hospice services may begin sooner.
3) Will I be the only hospice patient that the hospice staff serves?
Every hospice patient has access to a hospice volunteer, registered nurse, social worker, home health aide, and chaplain (also known as the interdisciplinary team). For each patient and family, the interdisciplinary team writes a care plan with the patient/family that is used to make sure the patient and family receive the care they need from the team. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice the number of patients/families as nurses. If needed, home health aides, who provide personal care to the patient, will visit most frequently.
All visits, however, are based on the patient and family needs as described in the care plan and the condition of the patient during the course of illness. The frequency of volunteers and spiritual care is often dependent upon the family request and the availability of these services. Travel requirements and other factors may cause some variation in how many patients each hospice staff serves.
4) Is hospice available after hours?
Hospice care is available ‘on-call’ after the administrative office has closed, seven days a week, 24 hours a day. Most hospices have nurses available to respond to a call for help within minutes, if necessary. Some hospice programs have chaplains and social workers on call as well.
5) How does the hospice work to keep the patient comfortable?
Many patients may have pain and other serious symptoms as illness progresses. Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress. Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during the course of their stay in hospice. Hospice staff works with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. The care plan is reviewed frequently to make sure any changes and new goals are in the plan.
6) What role does the hospice volunteer serve?
Hospice volunteers are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, and lending emotional support and companionship to patients and family members.
Because hospice volunteers spend time in patients’ and families’ homes, each hospice program generally has some type of application and interview process to assure the person is right for this type of volunteer work. In addition, hospice programs have an organized training program for their patient care volunteers. Areas covered by these training programs often include understanding hospice, confidentiality, working with families, listening skills, signs and symptoms of approaching death, loss and grief and bereavement support.
7) Can I be cared for by hospice if I reside in a nursing facility or other type of long-term care facility?
Hospice services can be provided to a terminally ill person wherever they live. This means a patient living in a nursing facility or long-term care facility can receive specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing facility. The hospice and the nursing home will have a written agreement in place in order for the hospice to serve residents of the facility.
8) What happens if I cannot stay at home due to my increasing care need and require a different place to stay during my final phase of life?
A growing number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals or inpatient residential centers to care for patients who cannot stay where they usually live. These patients may require a different place to live during this phase of their life when they need extra care. However, care in these settings is not covered under the Medicare or Medicaid Hospice Benefit. It is best to find out, well before hospice may be needed, if insurance or any other payer covers this type of care or if patients/families will be responsible for payment.
9) Do state and federal reviewers inspect and evaluate hospices?
Yes. There are state licensure requirements that must be met by hospice programs in order for them to deliver care. In addition, hospices must comply with federal regulations in order to be approved for reimbursement under Medicare. Hospices must periodically undergo inspection to be sure they are meeting regulatory standards in order to maintain their license to operate and the certification that permits Medicare reimbursement.
10) How can I be sure that quality hospice care is provided?
Many hospices use tools to let them see how well they are doing in relation to quality hospice standards. In addition, most programs use family satisfaction surveys to get feedback on the performance of their programs. To help hospice programs in making sure they give quality care and service, the National Hospice and Palliative Care Organization has developed recommended standards entitled ‘Standards of Practice for Hospice Programs’ as one way of ensuring quality.
There are also voluntary accreditation organizations that evaluate hospice programs to protect consumers. These organizations survey hospices to see whether they are providing care that meets defined quality standards. These reviews consider the customary practices of the hospice, such as policies and procedures, medical records, personal records, evaluation studies, and in many cases also include visits to patients and families currently under care of that hospice program. A hospice program may volunteer to obtain accreditation from one of these organizations.
What is long-term care?
Long-term care involves a variety of services designed to meet a person's health or personal care needs during a short or long period of time. These services help people live as independently and safely as possible when they can no longer perform many everyday activities on their own.
Long-term services can include:
home-based services -- home health care, homemaker services, friendly visitor/companion services, and emergency response systems
community-based services -- adult day service programs, senior centers, transportation services, meals programs, and respite care
facility-based care -- residential care homes, assisted living facilities, skilled nursing facilities, and continuing care retirement communities
How common is the need for long-term care among older people?
About 70 percent of people over age 65 need some type of long-term care during their lifetime. More than 40 percent need care in a nursing home for some period of time.
Who provides long-term care in the home?
It depends on a person's exact needs. Most home-based care is personal care, such as help with bathing, dressing, and taking medications. Unpaid family members, partners, friends, and neighbors provide most of this type of care. Private duty care companies can also provide these services for a fee, which can vary based on your community. Other types of home-based care, such as skilled nursing care after surgery, are provided by paid professionals, including nurses, home health care aides, and therapists through a home health agency and may be covered by Medicare.
I'm perfectly healthy. Why should I think about long-term care?
Maybe you will never need long-term care. But an unexpected accident, illness, or injury can change your needs, sometimes suddenly. The best time to think about long-term care is before you need it. Planning for the possibility of long-term care gives you time to learn about services in your community and what they cost. It also allows you to make important decisions while you are still able.
What if something happens to me and I can't talk with a health care provider to make my wishes known?
Planning ahead can ensure that your wishes for medical care in an emergency and at the end of life are expressed. If you haven't already, you should create certain legal documents, often referred to as advance directives.
Health care power of attorney -- This document names the person who will make medical decisions for you if you cannot make them yourself.
Living will -- This document records your wishes for medical treatment near the end of life. It spells out what life-sustaining treatment you do or do not want if you are terminally ill, permanently unconscious, or in the final stage of a fatal illness.
Do-not-resuscitate (DNR) order, if desired --This document tells health care providers not to perform cardiopulmonary resuscitation (CPR) or other life-support procedures if your heart stops or if you stop breathing.
Are there professionals who can help me find the right kind of long-term care?
It can be difficult to find the right kind of long-term care services, but there are sources you can turn to for help with this task. For example, geriatric care managers are professionals, usually nurses or social workers, who help people with their long-term care needs. They can assess a person's needs, develop a plan of care, and identify and coordinate whatever services are needed. See our information on the state licensing agencies and non-profits for assistance.
Do you like the community’s location and outward appearance?
Do you receive a warm greeting from staff welcoming you to the community?
Do residents socialize with each other and appear happy and comfortable?
Are you able to talk with residents about how they like the community and staff?
Are visits with the resident welcome at any time?
Is the community well-designed for your needs?
Is the floor plan easy to follow?
Are handrails available to aid in walking?
Are floors of a non-skid material and carpets firm to ease walking?
Does the community have good natural and artificial lighting?
Is the community clean, free of odors, and appropriately heated/cooled?
Does the community have sprinklers, smoke detectors, and clearly marked exits?
Needs Assessments, Residency Agreements, Costs & Finances
Are the appropriate postings required by your state in visual site?
Is a residency agreement available for review before move-in?
Is there a written plan of care for each resident? How frequently is it reviewed and updated?
Does the community have a process for assessing a resident’s need for services prior to move-in, and are those needs addressed periodically?
Are there any government, private, or corporate programs available to help cover the cost of services to the resident?
Are there different costs for various levels or categories of personal care?
Do billing, payment, and credit policies seem fair and reasonable?
Is there a complaints process for dissatisfied residents?
Medication & Health Care
Does the community have specific policies regarding storage of medication, assistance with medications, training and supervision of staff, and record keeping?
Is self-administration of medication allowed?
Does the community have a clearly stated procedure for responding to a resident’s medical emergency?
To what extent are ancillary services such as hospice or physical therapy available, and how are these services provided?
Services & Amenities
Can the community provide a list of care services available?
Is there a nurse on staff?
Is staff available to provide 24-hour assistance with activities of daily living (ADLs) if needed?ADLs include dressing, eating, mobility, hygiene and grooming, bathing, and toileting.
What are the training requirements for staff?
Are barber/beautician services offered on-site?
Does the community provide scheduled transportation to doctors’ offices, the hairdresser, shopping,and other activities desired by residents?
Individual Apartment Features
Are different sizes and types of apartments available?
Are apartments for single and double occupancy available?
Do residents have their own lockable doors?
Is a 24-hour emergency response system accessible from the apartment?
Are residents able to bring their own furnishings for their apartment? What may they bring? What is provided?
May residents keep food in their apartments?
May residents smoke in their apartments? In public spaces?
Social & Recreational Activities
Is there evidence of organized activities, such as a posted daily schedule, events in progress, reading materials, visitors, etc.?
Are resident's pets allowed in the community? Who is responsible for their care?
Do volunteers, including family members, come into the community to help with or to conduct programs?
Does the community create a sense of inclusion by encouraging residents to participate in activities?
Do dining room menus vary from day to day and meal to meal?
Does the community provide three nutritionally balanced meals a day, seven days a week?
Are snacks available?
May a resident request special foods, and can the community accommodate special dietary needs?
Are common dining areas available?
May residents eat meals in their apartment or suite?
May meals be provided at a time a resident would like, or are there set times for meals?
Does the community conduct criminal background checks on employees?
Does the community train staff on elder abuse and neglect? Is there a policy for reporting suspected abuse?
Does the community have a special wing or floor for residents with cognitive impairments such as Alzheimer’s disease? If so, is it secured?
Does the community accept long-term care insurance?
Does the community accept Medicaid?
What are the most common reasons why a resident may be asked to move out of the community?
Is the state inspection report available for review?