When people are facing the end of life, whether it is themselves or a loved one, it can be very difficult to decide between all the care options that are available. There are many factors to consider, which may complicate the picture for caregivers who are often faced with arranging appropriate end-of-life care in a timely manner.

Individuals at the end of life can receive care in a variety of settings. Their selection is largely dependent upon the level of care they require, the resources that are available and their individual wishes.

Levels of care and location can be strongly related when making a selection. For example, someone who is chronically ill and wishes to forego intensive life-sustaining measures in order to die peacefully at home would probably wish to avoid hospitalization at the end of their life. However, there are other care options available that can provide a patient like this (and their family) with comfort care and therapeutic services in their own home.

It can be very challenging for family members to assist with these weighty decisions or make them on a loved one’s behalf. Advance care planning is critical to ensuring that caregivers know what their loved ones’ preferences are. Proper planning also helps medical professionals accurately interpret and execute these wishes as well.

The following list summarizes end-of-life care options, where they are provided, the benefits they offer and how these services are paid for (with an approximation of current costs as available).

Hospice Care

Who Is It for?

  • Individuals who have been diagnosed with a terminal illness and are medically certified as having a life expectancy of six months or less can receive this type of care. In order for hospice care to be covered, a patient must decline curative treatments and elect symptom management and comfort care instead.

Benefits of Hospice Care

  • This type of care is not limited to one specific environment. Patients may receive care in a variety of settings, including at home, in the hospital, at a long-term care facility, such as a nursing home or an assisted living facility, or in a free-standing hospice facility.
  • The focus is to provide comfort care for those at the end of life.
  • This care includes support from an interdisciplinary team that addresses physical, psychosocial and spiritual needs.
  • Caregivers are able to benefit from short-term respite care and grief and loss counseling.
  • If a patient outlives their original life expectancy, their care can continue as long as they remain eligible for services.
  • Hospice care can be discontinued at any time if a patient changes their mind or their prognosis changes. So long as the patient is eligible, they may resume hospice care at any time.

Payment Sources and Costs

  • For those eligible and receiving care from a provider that is certified by the Centers for Medicare and Medicaid Services (CMS), all care related to the admitting diagnosis is covered under the Medicare and Medicaid Hospice Benefit. According to the National Hospice and Palliative Care Organization (NHPCO), the majority of hospice providers (92.8%) are certified by CMS. Care and medications for other unrelated conditions will be covered in the same way they were prior to the patient’s admission to hospice.
  • Private insurance may cover some costs, depending upon the policy.
  • By regulation, hospice providers cannot refuse care due to a patient’s inability to pay.
  • If there is a cost to patients or their families, it is typically based on a sliding scale fee structure.
  • If a patient requires short-term inpatient services in a long-term care facility or hospital, emergency room care, or ambulance transportation, it must be arranged through a hospice provider in order to be covered or it must be unrelated to the patient’s terminal illness.

Palliative Care

Who Is It for?

  • Palliative care and hospice are often confused. Individuals with a severe illness who require pain and symptom management but are found to have a life expectancy of longer than six months are able to receive palliative care. Conditions commonly associated with this care type include heart failure, chronic obstructive pulmonary disease (COPD), Parkinson’s disease, cancer, kidney failure and many others.

Benefits of Palliative Care

  • Palliative care programs that are separate from hospice provide comfort care but also offer the option for patients to continue curative care, if they so choose.
  • Some symptoms related to a chronic diagnosis that are commonly addressed by this type of care include pain, nausea, depression, sleep issues and shortness of breath. The ultimate goal is to improve the patient’s quality of life throughout the course of the illness.
  • Services can be received in any setting with support provided by an interdisciplinary team of health care professionals who are palliative care experts and skilled in discussing end-of-life care goals.

Payment Sources and Costs

  • Palliative care is covered in the same way that any other medical services are covered.
  • Most insurance plans, including Medicare and Medicaid, cover all or part of palliative care costs.
  • Additional services, such as home health aide or professional caregiver services, are not included.
  • Studies show that when patients are receiving services from a palliative care program or team, their hospital expenses are significantly decreased.

Home-Based Care

Who Is It for?

  • This is largely dependent upon the patient’s goals for care, the patient’s condition, and the amount and quality of caregiving support available. Consulting with the patient’s primary care physician and support team (usually family and/or friends) will usually indicate whether or not home-based care is an appropriate option. It is important for family caregivers to establish a significant care team in order to prevent burnout while providing care at home.

Benefits of Home-Based Care

  • Patients can remain at home instead of receiving care in an unfamiliar and potentially uncomfortable setting like a hospital.
  • This type of care provides more autonomy and control over one’s care, daily activities, visitors and the environment.
  • Patients are less likely to experience confusion or delirium and more likely to get better rest at home compared to an institutional setting.

Payment Sources and Costs

  • Costs are highly dependent upon the type, intensity and frequency of care that the patient requires.
  • Care may be received from hospice, community-based palliative care programs, home health agencies, professional caregivers and the patient’s personal support team, such as family members and friends.
  • Payment sources are dependent upon care needs and eligibility and include Medicare, Medicaid, private insurance, long-term care insurance, the Veterans Administration (VA) and private patient/family resources.
  • If not covered by other sources, patients and families often cover the costs of home health and homemaker/companion services privately, both of which can be approximately $20 per hour, depending upon location, needs and time frame of services. For some patients, these costs may be well worth the added comfort of remaining at home and may even be less costly than care in a hospital or long-term care facility.

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Long-Term Care Facilities

Who Is It for?

  • Individuals who require higher levels of support than can be provided in a home setting may need placement in a long-term care facility. This includes assisted living facilities and nursing homes. For example, a patient who requires around-the-clock supervision and frequent skilled nursing care would probably benefit from placement in a facility.
  • Some patients may already be living in a facility, but others may transition to one for a short-term stay following a hospitalization for rehabilitation purposes.

Benefits of Long-Term Care

  • More support is available to meet a wide range of care needs, including medical and personal care services.
  • In most settings, individuals may benefit from opportunities for increased socialization and rehabilitation services.
  • If a patient is already living in a long-term care facility, then receiving end-of-life care in this familiar setting may be the next best alternative to receiving care in their own home.

Payment Sources and Costs

  • Costs vary depending upon the patient’s location and their individual needs. According to Genworth, in 2018, costs averaged $4,000 per month for assisted living. The cost for a private room in a skilled nursing facility is considerably higher. The average monthly cost is $7,441 for a semi-private room and $8,365 for a private room.
  • Sources of payment include long-term care insurance, Medicare (covers rehabilitation after hospitalization only), Medicaid (covers room and board, if the patient is eligible), VA benefits, and patient or family resources.

Hospital-Based Care

Who Is It for?

  • Individuals who require and desire a more intense level of care and/or all means of curative and life-sustaining treatment usually opt for hospital-based care. This may include specialty and general inpatient units like intensive care units (ICUs) and coronary care units (CCUs).

Benefits of Hospital-Based Care

  • Medical personnel are immediately available around the clock.
  • The highest levels of care and treatment are close by and available as needed. This can be comforting for patients and family members, but may not always be effective in promoting healing and prolonging life.
  • Hospitals may provide flexible visitation for family members of a dying patient.

Payment Sources and Costs

  • Medicare, Medicaid and private insurance may cover parts of a patient’s hospitalization costs. Patients and families have very little control over costs, which can quickly escalate beyond what is anticipated. Depending upon the policy and coverage provided, a portion—perhaps significant—of the cost may not be covered. In this case, the patient is required to pay out of pocket.

Determining the best options for end-of-life care is a highly personal and individual matter. It can be difficult for caregivers to make timely decisions when emotions are running high, but by knowing what the options are and discussing end-of-life decisions before they arise, you will be better prepared to make choices that best align with your loved one’s wishes.

Source: The above information was adapted from a guide to end-of-life care published by Nursing@Simmons.