Prepared by Sarah Meltzer, MPA CFRE, The National Hospice and Palliative Care Organization
Considered the model for quality compassionate care for people facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.
Hospice focuses on caring, not curing. In most cases, care is provided in the patient’s home but may also be provided in freestanding hospice centers, hospitals, nursing homes, and other long-term care facilities. Hospice services are available to patients with any terminal illness or of any age, religion, or race.
The National Hospice and Palliative Care Organization (NHPCO) estimates that approximately 1,113,000 deaths occurred in 2013 in the U.S. while under the care of hospice. Other current data on hospice care in the U.S. include:
- The median length of service was 18 days. (This means that half of hospice patients received care for fewer than 18 days and half received care for more than 18 days.)
- Two-thirds of patients received care at home. The percentage of hospice patients receiving care in a hospice inpatient facility was 26.4%.
- 54% are female.
- 80% are Caucasian; 8% are African American/Black.
- Approximately 84% of hospice patients were 65 years of age or older, with 41% being 85 or older.
- Cancer diagnoses account for 36% of all hospice admissions.
- The top four non-cancer primary diagnoses for patients admitted to hospice:
Heart disease (13%)
Lung disease (10%)
Debility unspecified (5%)
- It is estimated that 5,800 hospice programs exist today and are located in all 50 states, the District of Columbia, Puerto Rico, Guam, and the U.S. Virgin Islands.
Hospice care is the highest-quality care available to patients and caregivers struggling with advanced, life-limiting illness. Choosing to elect hospice care is an important decision that can greatly enhance the quality of life for a patient with a life-limiting illness in addition to providing support to a patient’s family during a difficult time.
U.S. Department of Health and Human Services has indicated that expanding the reach of hospice care holds enormous potential benefits for those nearing the end of life, whether they are in nursing homes, their own homes, or in hospitals.
In study after study, people have said they prefer to die in their homes, free of pain, surrounded by family and loved ones. Analysis of national data from NHPCO reports that approximately 35% of hospice patients receive care for seven days or less. More than half die within 21 days. This is far too short a period for the patient and family to fully benefit from the services hospice offers.
On an economic level, hospice enrollment saves money for Medicare and improves care quality for Medicare beneficiaries with a number of different lengths of services. Studies have revealed that savings to Medicare are present for both cancer patients and non-cancer patients. Moreover, these savings appear to grow as the period of hospice enrollment lengthens, with the most common hospice enrollment periods of one to 105 days.
It has been suggested that an investment in the Medicare Hospice Benefit translates into savings overall for the Medicare system. For example, if 1,000 additional beneficiaries enrolled in hospice 15 to 30 days prior to death, Medicare could save more than $6.4 million. Hospice is the best solution for caring for the dying in a way that provides patient-centered care and is cost-effective for the Medicare system.
Philanthropic Support of Hospice and Palliative Care
Grantmakers working in aging have long been active in supporting research and programs related to end-of-life care.
The California HealthCare Foundation supports the California State University Institute for Palliative Care in San Marcos, CA, founded in 2012 as America's first statewide educational and workforce development initiative focused on offering health care professionals training in high-quality palliative care.
Along with the Cambia Health Foundation, CHCF also supports the Circle of Life Awards, which honor innovative palliative and end-of-life care in hospices, hospitals, health care systems, long-term care facilities, and other direct care providers. The CHCF is kicking off a new initiative to promote community screenings and post-screening discussions of "Being Mortal" (see Resources, below) and to assess their impact, with the goal of educating participants about choices they might make if they had a serious illness and encouraging them to identify and communicate their wishes to those who matter.
The Cambia Health Foundation in Portland, OR is committed to improving access to high-quality palliative care that addresses the physical, intellectual, emotional, cultural, and spiritual needs of patients and their families. It has sponsored The Conversation Project, dedicated to helping people talk about their wishes for end-of-life care. The project’s web site provides consumers with downloadable materials, including a Conversation Starter Kit.
The foundation also sponsors the Sojourns Scholar Leadership Program, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. Sojourns Scholars (nurses and physicians) receive $180,000 in funding over two years to conduct an innovative and impactful clinical, research, education, or policy project in the field of palliative care. Finally, Cambia has provided long-term support to community programs such as Familias en Accion in Portland, which serves people confronting chronic disease and provides palliative care to help improve quality of life and ease suffering.
The John A Gogian Foundation of Torrance, CA is sponsoring the construction and development of Caring House, described as “a loving home for the last stage” in Torrance. Caring House will be a true “home” environment in a quiet neighborhood, free from the equipment, noise, and interruptions typically found in hospitals and nursing homes. Everyone cared for at Caring House has a life expectancy of 3 months or less. The Gogian Foundation also supports Providence TrinityCare Hospice, which provides a full range of palliative care, hospice care, and compassionate support to patients and their families throughout Southern California.
The Jewish Healthcare Foundation of Pittsburgh, PA operates Closure, an initiative to change expectations for end-of-life. Its goal is to empower consumers and healthcare professionals with easy-to-access, simple-to-understand information and resources to make educated decisions about end-of-life care. Its web site offers a variety of reference and educational materials.
The John A. Hartford Foundation has been a long-time supporter of the spread of high-quality palliative care through its funding of the Center to Advance Palliative Care (CAPC), a leading resource for palliative care development and growth. As a national, member-based organization, CAPC provides hospitals, health systems, hospices, payers, and other healthcare organizations with the tools, training, technical assistance, and metrics needed to support successful implementation and integration of palliative care.
There are several key areas where funders could further support hospice, palliative care, and end-of-life issues:
1. Strengthening programs and services aimed at broadening access to hospice and palliative care to all people.
Opening access to everyone in our communities requires a commitment to inclusion and a strategic approach to meeting the specific needs of those in the communities served. Resources exist to help hospice providers improve access to end-of-life care through a variety of program development, education, outreach, and marketing strategies.
Funders can help hospice through support of programs that aim to increase access to diverse populations. African Americans account for approximately 8% of patients, and 6.8% of patients were identified as being of Hispanic or Latino origin. Studies have concluded that many African Americans, for example, are distrustful of the government and the healthcare system, a distrust that is rooted in both historical and present day experiences, and may play a role in the decisions families make when facing the challenges of a life-limiting illness.
2. Investing in communications vehicles that raise awareness and educate consumers about hospice and palliative care.
As stated above, most patients enroll in hospice too late to receive its full benefit. Late enrollment is associated with shorter lengths of stay and lower satisfaction with hospice and leaves little time to develop plans of care or prepare both the patient and family.
Funders can play a crucial role in helping patients understand and seek out hospice care earlier in their disease. Perceptions of hospice care and overall awareness in hospice continue to challenge the industry, but information on and “marketing” of hospice care can easily be integrated into community health and supportive care programs.
3. Focus on advance care planning.
Advance care planning is making decisions about the care you would want to receive if you become unable to speak for yourself. These are your decisions to make, regardless of what you choose for your care, and the decisions are based on your personal values, preferences, and discussions with your loved ones.
Advance care planning includes:
- Getting information on the types of life-sustaining treatments that are available.
- Deciding what types of treatment you would or would not want should you be diagnosed with a life-limiting illness.
- Sharing your personal values with your loved ones.
- Completing advance directives to describe what types of treatment you would or would not want should you be unable to speak for yourself.
Advance care conversations should happen at many levels, within the family unit, at the care level, etc. Funders can continue to invest resources into helping the consumer complete such crucial planning through the development of educational materials, discussion kits, community programs, public awareness campaigns, and many other activities.
Source: The National Hospice and Palliative Care Organization August 2015
“Facts and Figures: Hospice Care in America” National Hospice and Palliative Care Organization, 2014.
WebMD – Hospice overview
Writings by Atul Gawande, MD
- “Letting Go: What Should Medicine Do When It Can’t Save Your Life?” in The New Yorker Magazine, August 2, 2010 (see also a blog posting by Dan Nguyen).
- Being Mortal – book published October 2014. PBS has produced a Frontline documentary based on this book, and a Web site has been set up with additional discussion materials and links.
The Hospice Movement: A Better Way of Caring for the Dying, by Sandol Stoddard, 1992 (provides excellent background).
Handbook for Mortals: Guidance for People Facing Serious Illness, by Joanne Lynn, Janice Schuster, and Joan Harrold, 2011.
National Hospice and Palliative Care Organization
Hospice Action Network
NIH’s National Library of Medicine, Medline Plus; hospice section
Centers for Medicare and Medicaid Services; hospice information
Pallimed: A hospice & palliative medicine blog
Organizations, Initiatives, and Resources Focusing on End-of-Life Care
"Conversation Stopper: What's Preventing Physicians from Talking with Patients about End-of-Life and Advance Care Planning?", a poll of physicians co-commissioned by Cambia Health Foundation, the California Health Care Foundation, and The John A. Hartford Foundation. The poll found that, although 95% of doctors support the new Medicare benefit that pays for end-of-life consultations with patients, just 14% say they have billed for such a conversation. The poll also explores other barriers to this important form of care. A webinar presentation of the findings, "Conversation Stopper" is also available for further details.
The three foundations followed this with a set of focus groups in which providers and consumer reflected on "Conversation Starters" that would help make advance care planning more common and more effective.
National Hospice and Palliative Care Organization and its programs and affiliates that include:
Hospice Foundation of America - provides programs for professional development, public education and information on issues related to hospice and end-of-life care.
Center to Advance Palliative Care, a program for health professionals out of Mt. Sinai Medical Center (much of site content is for members).
National Healthcare Decisions Day - designed to inspire, educate, and empower the public and providers about the importance of advance care planning. Next NHDD is April 16, 2016.
Moments of Life, Made Possible by Hospice – a national, consumer awareness initiative designed to show that person-centered hospice and palliative care can make more meaningful moments possible, even in the face of serious or terminal illness.
My Gift of Grace – a card game used to foster discussions about death and end-of-life care.