What is extended care for the terminally ill?

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The medical, social, and psychological care of patients who are suffering from a terminal illness, the goal of which is to maintain as high a quality of life as possible for the remainder of a patient’s life
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Assessing Patient Needs

Difficult decisions await those trying to care for a patient with a terminal condition. Many families are faced with these decisions soon after the patient leaves the hospital, unable to function alone at home. Physicians and family members are able to choose among several options, depending on the needs and desires of the patient.

The decision process should start when the patient is still in the traditional hospital setting. The decision process should explore all alternatives, based on many factors. The degree of physician involvement is important, since not all doctors make monthly trips to visit patients at other facilities. The possibility of rapid deterioration of health or mental status is a vital concern, and nursing needs and other nonphysician services are also of utmost importance. The patient’s desires and the wishes of the family can be addressed through the patient’s legal rights to have a living will or durable power of attorney for health care decisions. Both can document, either through the patient’s own written directions or through the appointment of a relative as a legal representative, where the patient stands on the issue of being kept alive by artificial means. Specific requests regarding the use of ///cardiopulmonary resuscitation (CPR) should be made to the physician. These wishes are best discussed long before the patient is near death.

When the terminally ill patient also has a mental illness, such as dementia, the desires of the family members are weighed along with their willingness and ability to care for the person in the home. The problems of mobility, financial constraints, and quality-of-life concerns also enter the picture.

This is a picture that is not clear or easy to visualize. Many questions need to be answered before a suitable arrangement can be made regarding the continued care for a terminally ill person, especially an elderly one. These questions will lead to wiser long-term care decisions.

Extended care includes a wide range of social and support services and can be divided into three categories: in-home services, community-based services, and institutional care. The availability of these long-term care services may vary widely, with differences in eligibility requirements and costs. The choices to be reviewed must fit the family’s financial resources. Long-term care should also be based on the medical, personal, and social needs of the patient. Special attention should be paid to the patient’s cognitive, psychological/emotional, functional, and economic status. The value system, perspective, beliefs, and goals of the patient are extremely important.

For a terminally ill person, an assessment of the patient’s current and potential needs may have to be completed more than once as the illness progresses. A time line showing the patient’s current needs and needs within the next year, or even the next five years, should be made. This long-term planning must address physician involvement; nursing coverage; physical, speech, and occupational therapies; social worker and nutrition consultations; dental care; and the need for medical supplies and equipment. Other services that may be necessary include personal care, preparation of meals, transportation, housekeeping and home maintenance, and assistance with daily living skills. The amount of time for which these services must be available and the necessary financial resources may influence early decisions. Unfortunately, financial considerations often dictate the answer before all options can be explored.

The patient’s concerns regarding housing are influenced by such things as the amount of importance that is placed on staying in the present home and questions about living with or near family, friends, and religious community and about the availability of social activities. When the terminally ill person is elderly, this issue is even more sensitive. Because of the traumatic aspects of moving an elderly person from the home environment, the easiest transition for the patient should be sought. The choices are having a terminally ill patient remain at home or moving the patient to an extended care facility or a hospice center.

Before family members convene a meeting with the physician to discuss the options, all of them should speak with the patient. The terminal patient should not be given the impression that family members are making decisions for him or her. Such meetings allow patients to inform family members of their wishes, allowing the patients optimum input and providing information that the family may not have. Competent adults, even if they are elderly, have legal rights and privileges that must be honored. Some of these rights present ethical issues to family members trying to decide about long-term care. Unfortunately, such discussions often take place immediately after an older person has an emergency or a patient hears the diagnosis of a terminal illness.

When a patient is in an acute care hospital, the decision process should start before discharge. Many persons within an acute care hospital setting are qualified to assist in these decisions. An attending physician has available many tools to evaluate the patient’s needs, especially if the patient is elderly and the doctor has specialized in geriatric care. Questionnaires can determine the daily living needs as well as collect psychological data pertaining to cognitive, emotional, and perceptive functions. The family physician, during the discharge planning, can arrange for the family to speak to the social services area within the hospital.

The family and the patient would be wise to make a checklist to determine the areas of most concern, ranking them by importance so that all persons concerned are able to look at the options more objectively. Although each of the alternative living settings is unique, every person involved in these decisions should visit the actual setting, allowing the patient active involvement to make the transition easier.

Options for Long-Term Care

One of the first options available for a terminally ill patient is to return to his or her own home or to live with relatives. This decision of home health care must be based on the support available from the family: who will help provide care, when, and how. The need for home modifications to make the patient more independent or more comfortable may be a concern. If outside services, such as therapy, are needed, family members must determine how they can be obtained. Another difficult question is identifying responsibility for the financial costs of special care.

These questions are difficult to ask and even more difficult to answer. Families may underestimate the additional stress involved in caring for a terminally ill person in the home. Fortunately, services such as respite care are available to help relieve the additional stresses encountered. Having someone come into the home or having the patient placed in a day care facility can relieve some of the stresses temporarily. One of the first types of stress encountered is one of a physical nature, especially fatigue arising from the additional housekeeping activities of cleaning, laundering, shopping, and cooking for the patient. Additional emotional stress results from trying to balance time, responsibilities, and pressures. Financial worries may also cause stress, even though the costs of home care are often much less than for care in a hospital or other facility.

Home health care does not mean that the family or the patient is alone. Outside professional care, such as part-time nursing or supportive services, can be rendered when a terminal patient is in the home setting. These types of services fall under two headings: skilled care and supportive care. Skilled care involves physicians, nurses, and therapists. Supportive services are those that enable a patient to continue to live independently in the home. These services may meet personal needs (such as bathing and dressing) or involve the performance of chores (such as shopping, meal preparation, and housekeeping). Supportive services may be obtained as often as necessary, but they are not without cost. Moreover, the absence of one needed service may mean that home care is not the best option for the patient, at least at this point in time. Every patient and family member is entitled to make an objective evaluation of which agency is best suited for the homebound patient. An ongoing evaluation should be conducted to ensure that this option remains the best choice. Especially in the case of a terminally ill elder, home care may not remain a viable option for long: As the patient’s physical needs change, his or her environment may need to change as well.

One step beyond living independently in the home or with family members would be for the terminally ill patient to arrange for special housing, often called "supportive housing arrangements." This option may include continuing care retirement villages, board-and-care homes, domiciliary care, foster homes, personal care homes, group homes, and congregate care facilities. Board-and-care homes provide regular housekeeping and personal care services. This type of care is called "assisted living," or even "residential care," because the services vary widely, as do the costs. Another possibility is congregate housing, the environment of which is more like an updated version of an old resort hotel, with costs and services greatly variable. Continuing care communities offer independent living arrangements along with twenty-four-hour nursing care. These communities offer what is referred to as "life care," with a wide range of services available, a large entrance fee, monthly charges for services, and a lifetime commitment. They usually cost more than board-and-care homes or congregate housing.

Adult day care, which lies between home care and institutional care, emphasizes either social or medical needs. The three main types of adult day care are social, maintenance, and restorative, with each specializing in addressing the specific needs of the patient. The social model of adult day care emphasizes socialization while also giving families or caregivers some free time. The maintenance model, a mix of social and remedial components, differs from the restorative model, which offers extensive rehabilitation services. These settings may be alternatives to a nursing home. Some specialized adult day care centers, connected to hospitals, teach patients to live independently after discharge, with a special emphasis on daily living skills and the use of community resources.

If extensive care becomes necessary, especially for elderly patients, yet another option would be a nursing home facility, either an intermediate care or a skilled nursing care facility. The skilled nursing home is for the person needing intensive care, twenty-four-hour supervision under a physician’s supervision with treatment by a registered nurse. Intermediate care is suitable for those not needing round-the-clock supervision but unable to live alone. This option is expensive, and the costs generally are not reimbursed, placing all the financial responsibility on the patient or on family members. Although nursing homes in the United States are inspected and controlled by the government, the certification status and quality among homes differ greatly. Attention must be given to ensure good medical coverage, provisions for maintaining the patient’s individuality and dignity, available activities, nutritious meals, social and recreational activities, and intellectual stimulation.

The hospice setting offers intense medical supervision in comfortable and peaceful surroundings. The philosophy of hospice emphasizes the concept of supportive care and services for the terminally ill and their families in the home or a special center. Although hospices assist in some home health care services and inpatient care, they are designed for terminally ill patients who are no longer being treated for their diseases, with a life expectancy of only weeks or months. Specialized teams composed of a physician, nursing staff, volunteers, social workers, and clergy administer to the physical, spiritual, and emotional needs of each patient through the management of medical symptoms and the control of pain. If the patient is not placed into a hospice center, specialized care from the hospice team is available in the home to meet the needs of terminally ill patients and their families.

Perspective and Prospects

Caring for a terminally ill family member can be a rewarding experience as well as an exhausting one. The location where this care is traditionally given has changed over time and will continue to change in the future. Care in the patient’s home or with relatives is the least restrictive and one of the less expensive of the many options available. In fact, care in the home is often the only option because outside care is too expensive. Some family members are motivated to select home care because of a sense of obligation or a fear that no one else can care for the patient as well.

More supplemental resources are available than ever before, allowing home care to be a viable option for some. For many others, however, the additional stresses of responsibility for a terminally ill relative, especially an elderly one, are too high. At this point, tough decisions must be made about where the patient should live. Family members may not be prepared to care for the patient at the home. Despite the high costs of extended care facilities, this option is sometimes the only choice available. An emphasis on quality of life makes placement in the least restrictive environment a common choice. Concerns about pain management and the need for a caring staff may change this choice, however, when the terminally ill face the end of life.

In the United States, the high cost of health care makes such decisions even more difficult. Although the Patient Protection and Affordable Care Act of 2010 states that all insurers must cover palliative care, individual states decide whether and how hospice is covered under this provision. Some provisions have also been enacted to encourage the use of home- and community-based services over placement in nursing homes and other long-term facilities; however, long-term care coverage is not included among the law's provisions. Thus, the financial burden will continue to dictate placement for many of the terminally ill. Although many placement options exist, more will be developed in the future because of the increase in the number of older adults. Some will be suitable and some will not, making this decision process a problem for generations to come. While the final decision about where to live remains with the competent patient, the input of physicians and family members and the influence of financial questions will become larger concerns. Societal influences may also come to the surface as the number of elderly people grows. With improving medical technology, the elderly population will have a greater impact on governmental policy makers and will influence national health care provisions. Advances in medicine may also dictate where and how terminally ill patients are cared for.

Resources for this care are available, but they have specific requirements. Possible benefit providers include the federal government through Medicare and the Social Security Administration’s supplemental security income (SSI) program. Qualified persons should contact the Veterans Administration. State programs include Medicaid, the Department of Human Resources, and state supplemental programs. In addition to private insurance coverage, financial help may be sought through community agencies, such as municipal or other local support groups. Several health-related organizations offer some assistance for specific groups of patients, such as the American Cancer Society. Many private agencies, both nonprofit and for profit, offer services. The first and best approach for information when seeking care for a terminally ill patient is through family physicians, hospitals, and local health departments.


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