Where we die is not usually something we get to decide. But, given the choice, families should consider what type of care makes the most sense, where that care can be provided, whether family and friends are able to help, and how much it costs. It can be very difficult to compare all the care options that are available, and family caregivers are often tasked with making appropriate arrangements in a timely manner.
A person’s preferences for end-of-life care should be the primary factor guiding this decision, but the level of care they require and where it can be provided also play a role. 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.
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 for ensuring 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 describes 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).
Who Is Hospice 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 also decline curative treatments and elect to receive only symptom management and comfort care instead. Hospice is appropriate for terminal patients who no longer wish to receive life-extending treatment or whose illness is no longer responding to medical attempts to slow or cure it.
Benefits of Hospice Care
- This type of care is not limited to one specific environment. Patients may receive hospice 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 inpatient facility often called a hospice house.
- The goal of hospice is to provide comfort care that will increase a patient’s remaining quality of life.
- Hospice includes support from an interdisciplinary care team that addresses physical, psychosocial and spiritual needs. A member of the hospice team visits regularly and is always available by phone 24 hours a day, 7 days a week.
- Family caregivers can 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 meet the eligibility requirements for hospice. Some terminal patients remain on hospice care for years.
- Hospice care can be discontinued at any time if a patient changes their end-of-life care preferences or their prognosis changes. So long as the patient is eligible, they may resume hospice care at any time. Patients can switch hospice providers as well if they feel their needs are not being met.
Hospice Costs and Sources of Payment
- 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 by Medicare Part A. Medicaid programs and coverage vary from state to state, but most terminally ill beneficiaries are eligible to receive end-of-life care covered by the Medicaid hospice benefit. Most hospice providers are certified by CMS. According to the National Hospice and Palliative Care Organization (NHPCO), there were 4,515 Medicare-certified hospices operating in 2017.
- 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 health insurance may cover some costs, depending upon the policy.
- Some hospices offer charity care to patients who are medically eligible for services but are uninsured and do not have the means to pay for their care.
- 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 the hospice provider in order to be covered or it must be unrelated to the patient’s terminal illness. Otherwise, hospice service will be revoked.
Who Needs Palliative Care?
- Palliative care and hospice are often confused. Individuals with a severe illness who require pain relief and symptom management but are found to have a life expectancy of longer than six months are good candidates for palliative care. Conditions commonly associated with this care type include heart failure, chronic obstructive pulmonary disease (COPD), Parkinson’s disease, cancer, Alzheimer’s disease and other forms of dementia, kidney failure, and many others. According to the World Health Organization (WHO), of the 40 million people who need palliative care worldwide each year, only about 14 percent receive it.
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, anxiety, sleep issues and shortness of breath. The 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. Home-based palliative care programs are growing in popularity, especially for seniors.
- Studies show that when patients are receiving services from a palliative care program or team, their hospital visits and medical expenses are significantly decreased.
Costs of Palliative Care and Payment Sources
- Palliative care is covered in the same way that any other medical services are covered.
- Most public and private insurance plans, including Medicare and Medicaid, cover all or part of palliative care costs, although they may not be labeled or billed as palliative care.
- Additional services, such as home health care services, are not typically included unless a patient requires skilled nursing care and/or therapy services to help manage their condition.
Who Can Use In-Home Care?
- Suitability for in-home care is largely dependent upon a patient’s goals for care, their condition, and the amount and quality of caregiving support available. Consulting with the patient’s primary care physician and care team (family and/or friends) will usually indicate whether home-based care is an appropriate option. It is important for family caregivers to establish a significant care team to prevent burnout while providing care at home.
Benefits of In-Home Care
- Patients can remain in their own homes (or a family member’s home) instead of receiving care in an unfamiliar and potentially uncomfortable setting like a long-term care facility or hospital.
- This type of care can be customized for each patient and provides more autonomy and control over one’s daily activities, visitors and environment.
- Patients are less likely to experience confusion or delirium and more likely to get better rest at home compared to an institutional setting.
Home Care Costs and Payment Methods
- Costs are highly dependent upon the type, frequency and level of care a patient requires. Care may be received from a hospice provider, a community-based palliative care program, home health agencies, professional caregivers and the patient’s personal support team, such as family members and friends.
- Relying on family caregivers to provide personal care, assistance with activities of daily living (ADLs) and other hands-on care can help curb costs, but it places a great deal of pressure on family members and friends.
- Payment sources are dependent upon the type of care, the type of provider and patient eligibility and may include Medicare (for intermittent skilled nursing care provided at home), Medicaid, private insurance, long-term care insurance, veterans benefits and private patient/family resources.
- Medicare Part B (medical insurance) may cover some or all costs associated with durable medical equipment (DME) that a doctor prescribes for use in the home. Examples of DME include hospital beds, oxygen therapy equipment, patient lifts and mobility aids.
- If not covered by other sources, patients and families often cover the costs of home health and homemaker/companion services privately, which are approximately $23 and $22 per hour respectively, 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 provided in a long-term care facility.
Long-Term Care Facilities
Who Needs Residential Long-Term Care?
- Individuals who require higher levels of support than can be realistically 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 could opt for 24-hour home health care, but placement in a nursing home would likely be more cost-effective.
- Some patients may already reside in senior living communities, but others may transition to one for a short-term stay following a hospitalization or medical setback 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 senior living settings, individuals benefit from opportunities for increased socialization, recreational activities 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. Transitioning between care settings is often disorienting and upsetting for older adults.
Long-Term Care Costs and Methods of Payment
- Costs vary depending upon a senior’s location and their individual needs. According to the Genworth Cost of Care Survey 2019, costs averaged $4,051 per month for assisted living, but the cost for a room in a skilled nursing facility is considerably higher. The average monthly cost is $7,513 for a semi-private room and $8,517 for a private room.
- Sources of payment include long-term care insurance, Medicare (covers inpatient rehabilitation for a limited time and only after a qualifying hospitalization), Medicaid (covers room and board if the patient is eligible), VA benefits, and patient or family resources.
Who Needs Hospital Care?
- 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 or prolonging life.
- Hospitals may provide flexible visitation for family members of a dying patient, but privacy may be difficult to come by.
Costs of Hospital Care and Payment Methods
- Medicare Part A (hospital insurance), Medicaid and private insurance may cover parts of a patient’s hospital bills. Patients and families have very little control over costs, which can quickly soar beyond what is anticipated. Depending upon the patient’s insurance policy and coverage, a portion—perhaps significant—of hospital expenses may not be covered. In this case, the patient is required to pay out of pocket.
Questions to Help Guide End-of-Life Care Decisions
There is no “right” place to die. Determining the best options for end-of-life care is a highly personal and individual matter. The National Institute on Aging recommends considering the following questions to help you determine what is best for you and your family.
- How long is your loved one expected to live?
- What kind of end-of-life care is needed?
- Is the most likely caregiver able to give that kind of care?
- Where would the person who is dying want to receive this end-of-life care—a facility or at home, for example?
- What is the best setting for the type of care he or she wants?
- Who will pay for this care?
- Can children, grandchildren, friends, pets, etc., visit whenever they want?
- Is there a good chance that treatment in an intensive care unit will reverse the dying process, or instead draw it out?
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 and goals.
Sources: End of Life Care: The Impact of Options and Costs (https://onlinenursing.simmons.edu/nursing-blog/end-of-life-care/); Hospice Care Coverage (https://www.medicare.gov/coverage/hospice-care); Medicaid Hospice Benefits (https://www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html); NHPCO Facts and Figures 2018 Edition (https://39k5cm1a9u1968hg74aj3x51-wpengine.netdna-ssl.com/wp-content/uploads/2019/07/2018_NHPCO_Facts_Figures.pdf); Palliative Care (https://www.who.int/news-room/fact-sheets/detail/palliative-care); Palliative Care: Benefits, Barriers, and Best Practices (https://www.aafp.org/afp/2013/1215/p807.html); Durable medical equipment (DME) coverage (https://www.medicare.gov/coverage/durable-medical-equipment-dme-coverage); Where Can I Find Care for a Dying Relative? (https://www.nia.nih.gov/health/where-can-i-find-care-dying-relative)