End-of-life care

Who needs it?

End-of-life care is focused on the person who has an illness or condition that is

  • incurable and terminal (will lead to their death) and
  • has advanced to the point where the person’s remaining life expectancy a few days or weeks.

What care is involved?

End-of-life care involves both skilled care and personal care.

Skilled care is care provided by a physician, nurse, rehabilitation therapist or other licensed medical professional. The primary job of the hospice team is to provide skilled care. Palliative care teams also provide skilled care.

Personal care does not require a licensed medical professional. Personal care includes help with a broad range of tasks and activities. The needs will depend on the individual circumstances.

  • You’ve likely heard of ADLs (activities of daily living). Those are routine self-care tasks that healthy people tend to do every day without assistance. The ADLs are eating, bathing, dressing, toileting, transferring (walking) and continence.
  • Not as well known are IADLs (instrumental activities of daily living). They go beyond routing self-care. They’re part of being able to live independently in a community. The IADLs are housework, preparing meals, taking medications as prescribed, managing money, shopping for groceries or clothing, use of the telephone or other form of communication, and transportation within the community.
  • There are additional tasks to handle for someone with an illness. These include monitoring the person’s condition to help make care adjustments, scheduling appointments, and interacting and advocating with care providers, agencies and professionals.

Will family and friends provide the personal care?

Men and women dealing with illness receive a remarkable amount of help from unpaid family and friends. An estimated 34.2 million American adults served as an unpaid caregiver to a person age 50 or older in a recent year.  And 88% of that care was provided in the person’s own home or the home of a family member or other connected person. Source: Caregiving in the U.S. – 2015 by the National Alliance for Caregiving and the AARP Public Policy Institute.

By and large, hospice services are visiting services. Members of a hospice team will normally visit their patient for a few hours each week (e.g., five). Their focus is managing symptoms and medications, and on comfort. Other than help with bathing and tasks a hospice volunteer might take on (e.g., limited shopping), the hospice team generally does not help with personal care.

Unfortunately, many don’t have family or friends available to help. Or to the full extent needed. And available family and friends can become overwhelmed providing and arranging care.

When you need more help than available from family and friends

The options to focus on are

  • Hiring home care help (to come to your home)
  • Moving and receiving care outside your home at a
    • Skilled nursing facility,
    • Large assisted living facility or
    • Small assisted living homes (sometimes called board & care homes or group homes).

Where do patients receive hospice services?

NHPCO Facts and Figures reports that nationally hospice care (based on days of hospice care, 2107) was received

  • 55.7% at the patient’s residence (includes residence of family or friend)
  • 42.2% in a skilled nursing facilities, nursing facilities, assisted living facilities, and
    routine hospice days in a hospice inpatient facility
  • 0.8% in a hospice inpatient facility
  • 0.3% in an acute care hospital
  • 1.1 % at another location

Source: National Palliative Care and Hospice Organization, NHPCO Facts and Figures

The four levels of hospice care

The Medicare hospice benefit affords patients four levels of care to meet their clinical needs. Here’s the breakdown for the four levels (percentages based on days of care, 2017),

  • 98.2% – Routine Hospice Care (RHC) is the most common level of hospice care.
  • 0.2% – Continuous Home Care (CHC) is care provided for between 8 and 24 hours a day to manage pain and other acute medical symptoms. CHC services must be predominately nursing care, supplemented with caregiver and hospice aide services and are intended to maintain the terminally ill patient at home during a pain or symptom crisis.
  • 0.3% – Inpatient Respite Care (IRC) is available to provide temporary relief to the patient’s primary caregiver. Respite care can be provided in a hospital, hospice facility, or a long-term care facility that has sufficient 24 hour nursing personnel present.
  • 1.3% – General Inpatient Care (GIP) is provided for pain control or other acute symptom management that cannot feasibly be provided in any other setting. GIP begins when other efforts to manage symptoms are not sufficient. GIP can be provided in a Medicare certified hospital, hospice inpatient facility, or nursing facility that has a registered nursing available 24 hours a day to provide direct patient care.

Source: National Palliative Care and Hospice Organization, NHPCO Facts and Figures

Choosing a hospice service

The Basics: There are many lists of hospice services online and good overall advice on how to find a hospice service. The advice always includes checking on Medicare-certification and state licensing, and typically suggests obtaining references from care professionals. Medicare.gov/hospice compare and NHPCO.org and hospicefoundation.org are good sources.

The Checklist: Use this Checklist to explore important additional topics with any potential hospice. In the Checklist we refer to the patient as “Mom” for convenience. We created the Checklist based on our work with many hospices.

In three plain-language pages, the Checklist helps you explore nitty gritty questions most people wouldn’t think to ask in advance.

Download or print the Nitty Gritty Hospice Checklist for Families

Improving the experience

There’s a growing movement in the U.S. to improve the late life and end of life experience.

  • Hospice services, a key to improving end of life care care from the earliest days of the movement, have grown from one in 1974 to more than 4,000 today. And they now serve more than 1.3 million people per year.
  • Dr. Bill Thomas from Rochester, NY started the Eden Initiative and Green Homes — improving nursing homes across America.
  • Dr. Ira Byock in Torrance, CA, Dr. Atul Gawande from Boston, and Dr. B J Miller from San Francisco — work to improve the way doctors practice medicine for patients approaching the end of life.
  • Palliative care teams locally and across the U.S. are growing and getting stronger. Both within and outside hospitals, they improve patients’ lives by helping them manage symptoms and providing relief from pain and suffering.
  • Caring House and similar non-medical homes across the U.S. improve the end of life experience for men and women and families. Many such homes have banded together through the Omega Home Network, to learn from each other and help others trying to create new homes.