The concept of hospice is often misunderstood and many people really don't know what it is. This article dispels the myths with concrete facts and figures.
Hospice is not a place—it’s a program of care that focuses on comfort and quality of life for those who need it. Since its humble beginnings in 1974, hospice care in America has grown into an integral part of the health care fabric of the nation through the work of more than 5,300 hospice agencies. During its brief history, hospice care is now considered the model for quality, compassionate care for individuals facing a life-limiting illness with a focus on caring, not curing. “Hospice makes sure that people receive comfort, love and respect during one of life’s most significant experiences—the journey of life’s end,” says J. Donald Schumacher, PsyD., president and CEO of the National Hospice and Palliative Care Organization (NHPCO). Hospice is able to achieve this by providing expert medical care, pain management, and emotional/spiritual support expressly tailored to the patient’s needs and wishes. At the same time, support is provided to the patient’s loved ones as well, including a minimum of one year of bereavement support.
This focus on caring, not curing, is provided primarily through family members with the integrated skills of an interdisciplinary team of professionals. Teams consisting of the patient’s personal physician, hospice physician/medical director, nurses, home health aides, social workers, clergy/spiritual counselors, bereavement counselors, trained volunteers, and various therapists (physical, occupational) if needed, are available via phone or home visits as scheduled or needed. Some hospices even provide 24/7 one-on-one care at special palliative care units in hospitals or stand-alone facilities. Most notable is the fact that all of these professionals provide their skills at the home of the patient, where the vast majority of patients prefer to be. An important part of hospice service is the focus on the wishes and needs of the patient and the family. Once those are determined, the hospice team then sets up a customized care plan to accommodate those wishes and needs, with the appropriate interdisciplinary team members, and schedules the hospice visits to fulfill the care plan.
The National Hospice and Palliative Care Organization (NHPCO) is the largest membership organization representing hospices in the U.S. with 3,400 organizations throughout all fifty states, the District of Columbia, Puerto Rico, Guam, and the U.S. Virgin Islands. The following information from the “2012 NHPCO Facts and Figures: Hospice Care in America” is provided as a brief snapshot of the current hospice environment, which should be of interest to all Certified Senior Advisors.
Overview
An estimated 1.65 million patients received hospice care in 2011 representing a 17.9 percent increase since 2007. Of this 1.65 million, 1.06 million or approximately 44.6 percent of all deaths in the U.S. were under hospice care.
Of all the hospice deaths, 66.4 percent received care in the place the patient called home including private residences (41.5 percent), nursing homes (17.2 percent), and residential facilities (7.3 percent). Hospice inpatient facilities accounted for 26.1 percent, while acute care hospitals accounted for only 7.4 percent. In addition to providing home hospice care, approximately 20 percent of hospice agencies also operated a dedicated inpatient unit or facility. Most of these facilities are either freestanding or located on a hospital campus. Short-term inpatient care can be made available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite.
There are several different types of hospice agencies. The majority are independent, freestanding agencies (57.5 percent). Hospital systems account for 20.3 percent, home health agencies (16.8 percent) with nursing homes accounting for the remaining 5.2 percent. Of these agencies, 32 percent of the active Medicare hospice providers are nonprofit, while 63 percent are for-profit, and the remaining 5 percent are owned and operated by federal, state, or local government agencies.
Hospices range in size from very small all-volunteer agencies that care for fewer than fifty patients per year to large, national chains that care for thousands of patients each day. One measure of agency size is total admissions over the course of the year. In 2012, 77.4 percent of all hospices had fewer than five hundred total admissions; 17.7 percent had between 501-1,500 admissions and 4.9 percent had over 1,500 admissions per year.
Length of Service
Length of service (stay) is the total number of days that a hospice patient receives care in a hospice setting. It is influenced by a number of factors including disease course, access to care, but most notably timing of the referral to a hospice program. Even though hospice services are available to patients with life-threatening illnesses that a physician determines have a life expectancy of six months or less, the average length of service in 2012 was only 71.8 days, with over 35 percent of all hospice patients dying within the first seven days of hospice access and an additional 27 percent dying between eight and twenty-nine days. On the other side, 11.5 percent of all hospice patients continued hospice access past one hundred and eighty days via recertification from a physician.
How Are Hospice Services Paid For?
The Medicare hospice benefit, enacted by Congress in 1982, is the predominant source of payment for hospice care in America (84 percent). Other payment sources for hospice benefits are managed care/private insurance (7.7 percent), Medicaid hospice benefit (5.2 percent), uncompensated/charity care (1.3 percent), self-pay (1.1 percent) and other payment sources (0.7 percent).
Hospice Benefit Eligibility Requirements
The criteria most often utilized for admission into a hospice program is if the patient has been certified as being terminally ill by a physician and having a prognosis of six months or less if the disease runs its normal course. In order to qualify for the Medicare hospice benefit, the patient must be entitled to Medicare Part A.
Services Provided to Patients and Families
Among its major responsibilities, the interdisciplinary hospice team:
• Manages the patient’s pain and symptoms.
• Assists the patient and the family with the emotional, psychological, and spiritual aspects of dying.
• Provides needed drugs, medical supplies, and equipment.
• Instructs the family on how to care for the patient.
• Delivers special services, such as speech and physical therapy when needed.
• Provides bereavement care and counseling to surviving family and friends.
Since hospice services were introduced in the U.S., families constantly express their gratitude for the services and support that hospice provides them. They praise hospice for allowing patients to be in control of their own end-of-life journey in an environment of their own choosing, and that is conducive to bringing both the patient and family together and offering closure. Others appreciate the personal assistance and support of the interdisciplinary team members and their willingness to be at the patient’s and family’s side during the final stages of life.
Characteristics of the Hospice Patient
In 2011, 83.3 percent of all hospice patients were sixty years of age or older with more than one-third being over eighty-five. Females accounted for 56.4 percent of all hospice patients with 43.6 percent being male. White/Caucasian patients accounted for 82.8 percent of hospice patients, Black/African American, 8.5 percent; Multiracial/Other, 6.1 percent; Asian/Hawaiian/Pacific Islander, 2.4 percent; and American Indian/Alaskan Native, 0.2 percent.
When hospice care in the U.S. was first established, cancer patients made up the largest percentage of hospice admissions. In 2011, cancer represented only 37.7 percent of the primary diagnoses. The top four non-cancer primary diagnoses were: debility unspecified, 13.9 percent; dementia, 12.5 percent; heart disease, 11.4 percent; and lung disease, 8.5 percent. HIV/AIDS accounted for only 0.2 percent of all primary diagnoses.
Bereavement Support
For a minimum of one year following a patient’s death, grieving family members can access bereavement education and support through their hospice provider. In 2011, for each patient death, an average of two family members received bereavement support from their hospice provider, including follow-up phone calls, visits, and mailings. In addition, most hospice providers offer some level of bereavement services to communities that accounts for about 14.3 percent of those served by hospice bereavement programs.
Volunteer Commitment
The U.S. hospice movement was founded by the labor of volunteers and there is continued commitment to volunteer service no matter the size of the hospice provider. The NHPCO estimates that in 2011, 450,000 hospice volunteers provided twenty-one million hours of service by spending time with patients/families, providing clerical and other service support, and helping with fundraising efforts and/or board of director duties. Note that Medicare conditions of participation require volunteers to provide at least 5 percent of total patient care hours. With society placing increased emphasis on the importance of compassionate, end-of-life care for its citizens, CSAs and other professionals who work with older adults and their families can assist their clients by offering them hospice resources as a vital part of their end-of-life planning. •CSA
Douglas Wagemann has been involved with hospices nationally and internationally for thirty years. He is a certified funeral service practitioner and a certified cemetery funeral executive. He is currently on the board of directors of the National Hospice Foundation and the Foundation for Hospices of Sub-Sahara Africa. He can be contacted at dwagemann@gmail.com.
Hospice Care in America:What You May Not Know was recently published in the Summer 2014 edition of the CSA Journal.
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