Each of us facing the end of life will want to choose a setting for our care in the final days. While research shows that a majority of people choose to die at home, receiving supportive care from family, friends and health care providers, such as hospice care — this may not always be a workable or desirable solution for everyone. Sometimes the care needed is too complex to be successfully managed at home. Not everyone has caregivers available to help on a regular basis. And some people do not feel comfortable remaining at home at the end of life. Cultural traditions may also play a role in deciding on the location for end-of-life care.

Each person and family should make decisions on the place where end-of-life care will be given based on their unique circumstances and needs. The most commonly used options include hospice care, home health care, hospitals, and nursing homes.

Hospice

The goal of hospice care is to provide expert and compassionate physical, emotional and spiritual support and care for people who are dying and their families. Hospice care — which can be provided in one's home or, in some locations, at hospice in-patient facilities or other facilities, such as nursing homes and even hospitals — is focused on the quality of a person's life when an illness is no longer curable and when death is expected in six months or less, and on caring for each patient and his or her family as a unit.

Hospices provide care to any dying person who needs this care, regardless of his or her ability to pay. While Medicare, most state Medicaid programs and some private insurance reimburses hospices for costs, this is usually a flat daily dollar amount, often insufficient to cover the actual costs of providing care. That is why hospices nationwide rely heavily on community support and fundraising, to supplement the cost of care for people without resources and to help cover under-reimbursed costs of care.

For many, hospice is a well-kept secret. Research has shown that 75 percent of Americans don't know that hospice care can be provided at home (people think hospice is a place) and 90 percent don't realize that Medicare (and Medicaid, in many states) pays for it. For many people, learning about the comprehensive, expert care that hospice provides is often the answer to many end-of-life needs.

Care is provided by what is called an interdisciplinary team — a group of health care professionals and other skilled workers who work closely together on a daily basis to provide seamless, coordinated care designed to meet the particular needs of each patient and family. The typical hospice interdisciplinary team includes doctors, nurses, social workers, therapists of various kinds (physical, art, occupational), spiritual counselors/ chaplains, home health aides and volunteers. All of these people have received specialized training in the care of the dying, including the volunteers.

Hospice services. While hospice is perhaps best known for its remarkable expertise in managing pain and other symptoms, care extends well beyond this. Services include:

• Oversight of each patient's care by a physician, usually the hospice medical director. This physician often works with a patient's primary physician who has been overseeing the patient's care, if this is desirable. Patients are encouraged to continue to be in contact with their primary physician if they wish.
  
  
• Regular home visits by registered nurses. Each patient's registered nurse is focused on the patient's physical condition, and she or he communicates needs and requirements to the other team members. The nurse also assumes primary responsibility to teach family caregivers how to do many of the basic care functions needed, ranging from simple caregiving tasks to more complex matters, such as the use of medical equipment in the home, wound care, feeding, and so forth. Hospices also provide 24-hour-a-day emergency services and support from nurses, by telephone and in person if needed. Hospice doesn't "close" for the day, any more than hospitals do.
  
  
• Home services provided by home health aides. These individuals work closely and frequently with the patient and family to provide basic care needs for patients who need this support, and assistance with the tasks of daily living — including help getting in and out of bed, grooming care, bathing, housekeeping assistance and more. Home health aides in hospice will work with the family to determine who will be responsible for what tasks, making the patient comfortable with every level of personal care needed. Home health aides often come to know their patients very well, and are invaluable in keeping other members of the interdisciplinary team informed of a patient's condition and needs.
  
  
• Social work services. Social workers in hospice provide a wide range of services and support, depending on each patient and family's needs. The social worker can be of great help in coping with the needs of daily life, such as helping to untangle medical bills, applying for services like Social Security, Medicaid and other social services locally and nationally, helping people think through financial concerns like wills and other legal problems, and even funeral planning. Hospice social workers are masterful experts in coordinating services people need, working with the patient and family to find good solutions for all concerned.
  
  
• Spiritual or chaplain services. Hospice philosophy strongly supports the belief that each of us has an important spiritual side, and provides services to support that aspect of our lives. The end of life is often a time of thinking through the meaning of one's life, reviewing accomplishments, relationships, and beliefs. Hospice spiritual counselors are available to assist and support such explorations, to the degree this is wanted by the patient. Hospice care is non-denominational and at no time will anyone working with hospice attempt to encourage a patient or family member to adopt any particular faith or kind of belief system. Hospice chaplains or spiritual counselors are there to facilitate a patient's wishes, whether these are for support from a particular religion or for simple spiritual comfort. This service is always optional.
  
  
• Support from hospice volunteers. Hospice volunteers perform an enormous variety of tasks to support patients and families — and they will often tell you that there is a great variety of needs and wants from one family to the next. The range of services to patients may include chores like shopping, picking up medication, driving patients and family members to appointments, and much more. Often volunteers are asked to simply sit and talk with the dying person while caregivers have a respite or attend to other tasks. Each dying person and family finds its own best way to use the services of these skilled volunteers, who have received training in working with the dying from the hospice for whom they volunteer. Volunteers usually visit several times a week, or more often, as needed.
  
  
• Therapist services. The services from therapists will vary from patient to patient, and may include physical therapy, speech therapy, occupational therapy and nutrition and diet counseling, as needed.
  
  
• Medication. Hospice services include all medications needed for the dying person's terminal condition. These medication costs are covered under the hospice benefit provided by Medicare and most insurance.
  
  
• Medical equipment and supplies. Hospice covers the cost of all needed medical equipment, such as hospital beds, walkers, wheelchairs, oxygen equipment, and so forth. Hospice also generally covers the cost of medical supplies, such as bandages, diapers, special mattresses and other similar items. Hospice staff will see to it that each patient receives the equipment needed.
  
  
• Grief and loss services for the family. This unique service provides support to the family and loved ones of a person who has died in hospice care for as long as a year after the death, and at no cost. This service fits in with the hospice philosophy of providing care to the entire family unit, not only to the dying individual. Each hospice has its own programs of support, which can be tailored to meet each family's particular needs and wants. Trained grief and loss experts provide these services.

What hospice cannot do. Other than for brief periods of a few days at a time to handle an acute crisis situation, hospice cannot provide 24-hour a day, seven-day-a week care of a patient in his or her home. Hospice will work with a patient to see if a reliable system of family or friends to provide care can be put in place — but if this cannot be done or if care needs become too complicated to be safely provided in the home, then the hospice staff will assist the patient in considering other solutions. Some of these are discussed below.

Other hospice solutions.

• Some hospices offer inpatient hospice care in a health care facility created to provide hospice care outside the home. These may take the form of freestanding hospice units or even hospice acute care units, where patients may stay for relatively short periods of time, usually only a few days or weeks. These inpatient settings are excellent services to use when a patient is first admitted and achieving good pain control is needed, and also for the very end of life, when care needs may exceed the family caregiver's ability. It is also possible for patients to reside in a residential unit for several days to allow family caregivers to rest and re-gather their energies.
  
  
• Some hospices offer what is called "residential hospice," a home-like unit for patients who don't require acute care and yet cannot live at home. These units are designed for longer-term stays than the traditional inpatient hospice facility. Some hospices have both an inpatient hospice and a residential hospice capability, and patients can move from one to another as needed. The residential hospice setting may require patients to pay a fee, if they can do so, to cover the cost of room and board, because the Medicare and Medicaid hospice benefit does not cover these costs.
  
  
• Hospice care in nursing homes is another option. Sometimes hospices will contract with area nursing homes to provide a comfortable and secure place for hospice patients who cannot remain at home. In these instances, the nursing home staff provides routine services that it would to any other patient, and the hospice interdisciplinary team members visit the patient regularly, just as they would in a home setting, providing all the services in the nursing home. Hospice also takes care of patients who are already living in nursing homes. Some nursing homes have their own hospice care teams, and others make arrangements for end-of-life care with hospices in the community.

Choosing hospice care. In general, hospice services are designed to support the needs of any person with a terminal illness whose life expectancy is anticipated to be six months or less. This arbitrary timeline is part of Medicare regulation of hospice care — but if a person lives longer than six months, yet is still considered to be terminally ill, the hospice benefit continues in effect.

Unfortunately, most people using hospice care are in the program for a relatively short period of time, generally a month or less — and this is insufficient to make full use of the wide range of hospices skills and services. The reasons for these relatively short stays range from physician reluctance to inform patients that their illness is terminal to patient and family reluctance to admit that death is coming. Also, many people do not really know much about hospice care, and unless a physician or other health care provider mentions it, they don't really understand how hospice can help.

If you think that hospice care may be helpful for you, bring the topic up to your health care team for a full discussion of this care option. There is no reason to wait for your physician to bring it to your attention. You should also consider contacting (or having a caregiver contact) your community's hospice for a full discussion of the services offered. To be admitted to hospice under Medicare and most insurance regulations, two physicians — usually your physician and the hospice medical director — must certify that you are terminally ill and not likely to live longer than six months. As explained above, should you live longer, your hospice benefits can be extended as needed.

Hospitals

In general, hospitals are focused on care that can cure. This makes the hospital a potentially difficult setting for end-of-life care. However, there may be times when a dying person's physical needs are such that hospitalization, for a short time period, can be helpful. Also, in some cases, small community hospitals, especially those in rural areas where many other services many not be available, provide competent end-of-life care as well as curative treatment. Hospitals have improved the quality of pain management they provide in recent years, and many hospitals now have pain management staff available to help.

However, if your physician or other health care provider suggests that you should enter a hospital for end-of-life care, ask about other options that might be more comfortable and supportive for you as you face the end of life.

Nursing Homes

Nursing homes vary in their capability to provide good end-of-life care. If you are a resident in a nursing home facing the end of life, ask the staff how your care will be managed. End-of-life care is not the same as routine care in most instances, and the home should be prepared to provide special services to help. Some nursing homes have their own hospice services, and others have arrangements with community hospice staff for specialized end-of-life care in the nursing home.

If no special services are offered for end-of-life care, consider contacting your area hospice program for advice and assistance.

Home Health Care

Home health services can be a reasonable alternative for some people remaining in a hospital or nursing home. These services are organized to enable people to stay at home and live with as much independence as possible.

Ask your health care team about home health services in your area, with emphasis on the range of services they provide, their reputation for quality of care, and their suitability for your situation. Some home health services are able to provide end-of-life care, but many others are not. It is important to understand that home health care is just that — health care — in most agencies, and does not routinely include the full array of services that hospices provide.

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