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Getting help for the seriously ill

Much as a family might wish to provide all the care for an ailing loved one, achieving that objective is not always possible. Caregiving is hard work. The patient may need 24-hour-a-day attention. Providing one hundred percent of the physical and emotional care for an undetermined period of time may prove to be too much for the family to handle. Fortunately, it's not an all-or-nothing proposition. Although regulations concerning different types of care vary by state, and some areas do not have all of the options listed here, this article will give you a general idea of the kind of help that is available.

Certainly, no one can replace the love provided by family members. But if you can get help with some of the physical aspects of caring-things others can easily do-then you will have more time and energy to provide valuable emotional support to the patient.

Definitions: Types of care

Three levels of care can be provided by others:

Supportive care, which includes assistance such as transportation to and from appointments, meal preparation, shopping, housekeeping, and laundry services.

Personal care, which includes help with dressing, grooming, bathing, feeding, incontinence care, and transferring the patient from bed to chair. It can also include taking and recording vital signs (e.g., blood pressure or pulse) and giving medications.

Skilled care, which includes procedures or evaluations that require the skills of a licensed nurse. It involves tasks such as hooking up an IV, giving a shot, or monitoring rapid changes in condition.

These types of care can be provided in many different ways. Some services are offered at home. Some require a move to a specific setting such as an assisted living facility or a nursing home. No matter where your loved one lives, if he or she has been diagnosed with an incurable illness, hospice can offer tremendous support. Because hospice is available in a variety of settings, we recommend you learn about hospice services first in case you need them. Then you can consider which location and type of care is appropriate for your situation.

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Help at home

Most patients prefer to stay at home as long as they can. The familiar environment provides comfort in and of itself. Home health care is a service that can be ordered by your physician if the patient requires the skilled care of a nurse several times a week. With this service, a nurse's aide may also be available to come every other day to help with personal care such as bathing and grooming.

Home health care does not provide supportive services such as shopping, laundry, or housecleaning. If the patient needs this kind of general help around the house, you may want to contact a company that offers in-home care providers. Although this term sounds very similar to the term home health care, this type of care encompasses a broader range of services. You do not need a doctor's orders to work with an in-home care provider. However, because supportive care (housekeeping, laundry, and cooking) is not considered to be medical assistance, it is not generally covered by insurance. People who require both supportive services and personal or skilled care often turn to in-home care providers because home health care agencies usually offer only personal and skilled care.

Staffing: Depending on the hiring practices of the company, personal care may be provided by a certified nursing assistant or by noncertified staff. Skilled care, as described earlier, must be performed by a licensed practical or registered nurse (LPN or RN). Supportive care is usually provided by unlicensed personnel. People who choose to stay at home can also receive help from hospice provided they meet the eligibility requirements noted earlier.

The financial side: Services provided in the home may be expensive depending on insurance coverage, the patient's financial situation, and the amount and type of services used. Medicare and most private insurance will cover skilled care and some personal care, at least for a limited time. To be eligible, the patient must be considered "homebound" (i.e., leaving home for activities such as medical appointments or church requires considerable effort). Unless the patient is on Medicaid, the cost of supportive services (e.g., meal preparation, light housekeeping, help getting to the bathroom) is not reimbursed by Medicare or insurance and must be paid for by the family.

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Hospice Care

Hospice service emphasizes comfort and quality of life. It is specifically designed to focus on the relief of physical, emotional, or spiritual pain experienced by those with an incurable illness. This holistic approach extends to both the patient and the family. Some communities have an inpatient hospice facility-a special building where people near the end of life can live and receive 24-hour care by trained staff. Most communities have more-modest hospice services. Rather than move to a hospice facility, for instance, patients receive several home visits each week. As a general rule, patients may receive hospice care whether they are living at home, in an assisted living facility, or in retirement apartments. In many states they can also receive hospice if they live in a foster care home, a residential care facility, or a skilled nursing facility. Hospice does not provide day-in, day-out care, so most people who use this service also have ongoing family or paid caregivers available.

Staffing: Hospice uses a team approach to provide physical, emotional, and spiritual support to the patient and his/her family members. The hospice team includes nurses, social workers, and bath aides, as well as volunteers for short respite visits and interfaith chaplains who assist with spiritual concerns. Hospice personnel are trained to maintain comfort on all levels ("comfort care"), with a special emphasis on pain control and management of distressing symptoms.

Hospice services typically include a visit from a nurse two to three times a week as well as help from social workers who can connect the family to social service programs. Most medical equipment and medications associated with maintaining comfort, including pain medicines, are provided as part of hospice care. Weekly visits from a volunteer are also available and give family caregivers a few hours of respite. Nurse's aides may come during the week to help bathe and shave the patient. In addition, the counsel of a chaplain is available anytime upon request.

The financial side
: If the patient is relying upon Medicare to pay for hospice services, two requirements must be met: A physician must indicate that he/she does not believe the patient is likely to live longer than six months; and the patient, family, and physician must agree they do not wish to pursue further curative treatments (for example, chemotherapy or radiation) and instead want to focus on providing comfort care and enhancing quality of life for the time the patient has left. Depending on the policy, those with private insurance may be able to continue curative treatment while also receiving hospice services.

If the patient has decided to opt for comfort care and let nature take its course, hospice can be extremely helpful for both the person who is ill and for the family caregivers. Physicians often wait for the family to request this service. Unfortunately, many families do not seek hospice care until very late in the disease. Once they begin to receive hospice support, they often realize they had needed the help weeks and even months earlier. Hospice programs recommend at least two months of care so the patient and family can receive the optimum benefit of the services provided. If you are beginning to think that hospice might be a useful option for your family, we suggest you start the conversation with your doctor, or call your local hospice to find out more information. Sooner is better than later.

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Housing options: Assisted living facilities

If the patient has access to some help, for instance a spouse who is able to provide personal care, assisted living may be a good choice. Assisted living facilities provide assistance with a few tasks such as meal preparation, light housekeeping, and reminders to take medication. These facilities usually comprise unfurnished one-bedroom and studio apartments. They are very social settings and often include organized activities and a central dining room for meals. This arrangement can be very helpful not only for the patient, but also for a caregiving spouse because it offsets the isolation common to people caring for the seriously ill. If the person who is ill needs more help than that provided at assisted living facilities and no spouse or family member is available to give this care, you can usually arrange for home health care or in-home care providers to assist with these needs. Some facilities have a special wing for individuals who have Alzheimer's or other forms of dementia and are not able to live quite so independently.

Staffing: Depending on the hiring practices of the facility, nonnursing services may be provided by certified nursing assistants or noncertified personnel. Skilled care must be performed by an LPN or an RN. At most assisted living facilities, a licensed nurse consultant is available but is not necessarily on site every day.

The financial side: Because the care provided in an assisted living facility is considered to be supportive service, Medicare, Medicaid, or insurance companies do not generally reimburse the cost of the monthly fee. This is starting to change, however, so ask the facility about your financial options. Reimbursable skilled services (i.e., hospice, palliative care, and home health care) can be provided to patients who live in an assisted living facility.

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Housing options: Board and care homes

Board and care homes are available in some areas. They are typically family-run businesses where the owner of the house takes in older adult boarders who can no longer live on their own. Also known as "adult foster homes", these facilities are generally an appropriate choice if the patient needs only minimal help and some supportive or personal care services. (Some board and care homes, however, are certified to provide more-intensive care.) As compared with other facilities, adult foster homes are small, with four to eight residents living in a single family home. Some homes provide private bedrooms; others offer the cost savings of sharing with a roommate. Usually the board and care home provides the furniture, but residents bring their own personal items to decorate the room. In keeping with the homelike setting, meals are usually served family style, with residents gathering to eat together in the dining room.

Staffing: Depending on the hiring practices of the board and care home, supportive and personal care services may be provided by a noncertified or certified nursing assistant. Adult foster homes usually do not have a licensed nurse on the premises. Regulation of board and care homes varies quite a bit from state to state.

The financial side: As with an assisted living facility, most of the care provided at a board and care home is supportive in nature and therefore is not reimbursed by Medicare or other medical insurance. If the owner of the home is amenable, reimbursable skilled care can be provided in the foster home setting by outside services such as hospice or home health care.

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Housing options: Skilled nursing facilities

Skilled nursing facilities are designed to provide care for patients with numerous or complex personal care needs that require 24-hour-a-day assistance. Depending on the family's finances and caregiving abilities, the best care may involve a move to a skilled nursing facility. If the person you care for is terminally ill and nearing the end of his or her life, you may want to look for a facility that recognizes the special needs that families have at this time. Many skilled nursing facilities have designated private rooms with extra space and beds so family members can visit and stay overnight.

Staffing: At the skilled nursing facility, licensed staff provide supportive, personal, and skilled care services 24 hours a day. In some facilities, the hospice team can also offer spiritual, physical, and social support services for nursing home residents.

The financial side
: Medicare has very specific regulations about when it will and won't cover care in a skilled nursing facility. It also includes regulations about when a patient can stay at a skilled nursing facility and also receive hospice care. It is best to talk with the staff of the facility or a hospice social worker to determine if your situation qualifies you for Medicare coverage. Persons with low income may be able to receive assistance from Medicaid if a doctor certifies that they need around-the-clock skilled care.

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Palliative Care

Like hospice, palliative care offers holistic support for the relief of suffering.  The focus is on quality of life and on emotional, spiritual and physical comfort, whether the individual has a terminal condition or not. Palliative care is not usually available as a home-based support service. Typically it is more of a short-term consultation involving one or two office visits with one or two specialists who work together as a team. Often a patient receives a palliative care consultation during a hospital or nursing home stay. But anyone with a serious condition can ask their doctor to request a palliative care consultation. Like hospice, palliative care services address the needs of the patient and the family together. Palliative care specialists understand that the family caregivers are an integral part of providing good care.

Staffing: Palliative care is often delivered by a team of specialists. Like hospice, the team is headed by a physician who has specific training on managing day-to-day pain and distressing side effects and symptoms. Because these side effects and symptoms can be physical, emotional, or spiritual, there may also be a nurse or nurse-specialist, a social worker and a chaplain on the team. Each has their own specialty and will be called on to participate as needed. Much the way any other specialist might work, the team talks to the patient and family and makes recommendations that are also reported to the patient's primary doctor.

The financial side: Palliative care is significantly different from hospice in terms of eligibility and insurance coverage. There are generally no eligibility requirements. The patient does not need to have a life-threatening illness or short life expectancy to receive a consultation. Unlike hospice, palliative care consultations are not 100% covered by Medicare. Palliative care visits are billed as any medical visit would be. There are the usual co-payments and deductible requirements that would go along with any medical visit. The primary physician must make a referral for a consultation. There may or may not be a need for pre-authorization from the patient's insurance company. It is best to call the insurance carrier to find out what is covered by the policy.

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Safety note

Many family members worry about the safety of their loved one when they need to have others provide care. To ease your mind, when you call various facilities about their services, you may want to ask if a criminal background check and drug testing are a routine part of the company's hiring procedure.

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