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Care at the End of Life (cont.)

Where to Receive Care

Deciding where you will receive care as your illness progresses can be challenging, but planning now for your care can decrease your anxiety later on. Talk to your loved ones about the type of care you would like to receive at the end of your life. Discuss their expectations as well as your wishes, care needs, finances, and the needs of your family. Your choice may change as your illness changes.

A study of seriously ill patients in hospitals and their family members showed that the most important elements of end-of-life care were:1

  • Trust and confidence in the doctor who is treating the patient.
  • Having the option of not being on life support.
  • Effective communication between the patient, the patient's family, and the doctor.

Several care options are available, including hospice, home care, nursing home placement, or care from an assisted-living facility. Your choices may be limited by your medical coverage or what you can afford to pay.

Studies show that most people die in a hospital or nursing home.2 If you would prefer to have your final care at home, planning ahead may allow you to do so.

Hospice care

As death nears, you may choose to receive help and support from hospice. Hospice care focuses on using palliative therapies exclusively to manage pain and other symptoms when there is no cure for your condition and death is anticipated within the next 6 months. Part of this care is keeping you as alert and comfortable as possible in a familiar environment, surrounded by your family and friends. When you choose hospice care, you agree to forego curative and life-sustaining treatments. But you can change your treatment plan at any time.

Hospice care is provided by a team of health workers, including nurses, social workers, volunteers, counselors, and personal care assistants. Your doctor can continue to direct your care and work closely with you and the hospice team. Hospice care most often occurs at your home, although it can be given in a nursing home, a hospital, or a hospice center. If you remain at home, the hospice team supports your family in their caregiving. And "family" is not limited to your spouse (or partner) or blood relatives. Friends from your workplace, church, community, or neighborhood may be considered part of your family.

Hospice care seeks to relieve physical symptoms and address your emotional, social, and spiritual needs, as well as the needs of your loved ones. Hospice offers a chance to address difficult but normal concerns that you and those you love may have about death and dying, such as pain, unresolved issues, and caregiving needs. If you choose, the counseling and support services that hospice provides will offer opportunities to work on mending important relationships and to explore spiritual issues.

The hospice team can help with advance directive forms and with legal and financial affairs. Also, hospice staff can answer questions about treatment and what to expect during the dying process. The team can also help with physical needs, such as bathing and pain control.

Hospice services are a benefit of many private health insurance policies. Check your health plan for specific information about hospice coverage. Also, if you qualify for Medicare benefits, hospice services are covered through the Medicare hospice benefit.

For more information on choosing hospice, see the topic Hospice Care.

Home care

You may choose to remain at home as your illness progresses, especially if you have a large support network of family and friends who can help with your care. Another factor in making this choice may be whether you have the financial resources to hire trained caregivers to help your family with your care. Remaining at home in a familiar environment, surrounded by loved ones, may be the best care option in these circumstances.

Community services are available to help your family provide care for you at home. Talk to your doctor about receiving help from hospice or a nursing agency. Make a list of people who can help your family with your care, including people from work, church, or community groups. In many larger communities, private case management practices are available to help find and coordinate the services you may need in order to be cared for at home.

Nursing home care

You may consider receiving care in a nursing home if you are unable to remain at home during your illness. A nursing home also may be the best option if you need more skilled care than can be provided at home, or if a family member is unable to care for you because he or she is ill, disabled, or elderly.

Information on Click here to view an Actionset.choosing a nursing home may help you as you decide whether nursing home care is the best choice for you.

Assisted-living facilities

Assisted-living facilities are a popular alternative to nursing homes for people who can provide the majority of their own care. Assisted-living facilities generally offer individual rooms with limited cooking facilities in each unit. Residents usually meet in a dining room for meals. Housekeeping and laundry services, social activities, and access to a nurse are typically provided.

Some assisted-living facilities are connected to a nursing home. In these facilities, you can transfer from the assisted-care facility to the nursing home when you are no longer able to provide your own care. Get written information from the assisted-living facility about what is expected if your condition gets worse and you are no longer able to care for yourself. Many assisted-living facilities require that the resident move to a nursing home or hire a personal caregiver if skilled care is needed.

Regulations for assisted-living facilities vary from state to state.

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