End of Life Issues

Primary Listings

Hospice Compare – medicare.gov (all states) Editor's Pick

Compare up to 3 hospices at a time at Hospice Compare by Medicare.gov. Site currently reports performance on quality measures related to patient preferences and quality of care in managing pain and treating symptoms, 2019 data. Family satisfaction is also reported, including family training and communication, emotional support, pain management, overall rating of the hospice and willingness to recommend the hospice (national average is that 84% would recommend). Check to see what kinds of patients the hospice tends to serve – for example, cancer, dementia, heart disease, stroke. Site is updated quarterly by CMS. Search by zip code, state or city. All hospice agencies report, or face financial penalties. Published by the federal government. Good, reliable website.  Most measures have data from 2020-2021, as of the February 2022 update.

Hospice – Find a Hospice (NHPCO)

Find a hospice or palliative care provider at this site by NHPCO. The National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the US. Their searchable database helps consumers find a member hospice, palliative care program or bereavement service.

Put It In Writing – Advance Directives

Put It In Writing provides the basics about advance directives. Created by the American Hospital Association. Advance directives include living wills and durable power of attorney for health care. Encourages patients to express their preferences for end-of-life care

Survey: Californians’ Beliefs and Preferences for Death and Dying

What beliefs and preferences toward death and dying are held by Californians? Survey report describes people’s attitudes about end of life care, preparations, ICU use, and more.  “Final Chapter: Californians’ Attitudes and Experiences with Death and Dying” is based on a survey of 1669 people in 2011. California Healthcare Foundation, 31 pages, Feb. 2012

See also Consumer Health Ratings – Ratings, Report Cards and Credentials – Compare Quality Editor's Pick

See Consumer Health Ratings’ main page to compare Quality. Find ratings, report cards and credentials. Free public reports of quality ratings and comparisons among individual hospitals, nursing homes, health insurance plans, and other health care services. Check your physician’s credentials and look up your doctor’s medical license in this category.

Other Helpful Listings

Caregiver Resources – Long-term care at home

Find caregiver resources for long-term care at home, with this guide. Caregiving at Home: A Guide to Community Resources is from the nonprofit Family Caregiver Alliance, National Center on Caregiving (based in San Francisco).  Fact sheet, updated 2017.

Eldercare Locator – Search services for independent living Editor's Pick

Eldercare Locator is a way to search for services supporting senior independent living. US Department of Health and Human Services provides a free public service through the US Administration on Aging, to help seniors and caregivers find resources anywhere in the country. In addition to the website, you may call 1-800-677-1116 on weekdays to speak with someone who can help (English or Spanish). Very easy to use, by putting in your zip code.

Hospice Facts and Figures on Hospice Care in America – NHPCO

NHPCO’s 2022 report “Facts & Figures” describes who gets hospice care in America, and for how long. The median length of service was 18 days. The average lifetime amount of time in the program was higher (97 days), in part because of the long-stay effect of Alzheimer’s patients. The top 3 diagnosis categories were Alzheimer’s, dementia and Parkinson’s (median 56 days); heart disease (median 33 days); and cancer (median length of service of 17 days), The 2022 edition shows patient care and provider statistics for 2020, the first year of the pandemic. There were 5,058 Medicare-certified hospices operating in 2020. Less than half (47.8%) of Medicare patients who died that year, chose to be in hospice. This compares to almost 52% in 2019. Yet, despite the percentage, almost 7% more patients chose hospice. The high number of Covid deaths in 2020 may have skewed the numbers. The median length of stay in hospice for COVID-19 patients was only 4 days. Many Covid patients and families may not have had sufficient time to decide about hospice enrollment. NHPCO is the National Hospice and Palliative Care Organization. Published December 2022.

Joint Commission Disease-Specific Care – Certified Hospitals

Joint Commission Disease-Specific Care – Certified Hospitals helps you find hospitals that have achieved Certification or Advanced Certification in any of about 9 programs. Advanced certification in stroke care (Primary Stroke Centers or two other stroke designations) is the most common. Other advanced certification programs are in hip and knee, inpatient diabetes, perinatal services, and ventricular assist devices. Add-on certification is available for palliative care and primary care medical home. Many are listed as having Advanced programs. The Joint Commission is the leading accrediting body for hospitals.

Palliative Care – Provider Program Directory

Hospitals with Palliative Care programs are listed in this provider directory by the Center to Advance Palliative Care (CAPC) in conjunction with the National Palliative Care Registry. Palliative care specializes in the relief of the pain, symptoms and stress of serious illness; it can be provided along with curative treatment.