By Mike Magee, MD What originated in the United Kingdom a half century ago, and arrived on the shores of the United States some three decades ago is today a mainstream health care institution. What is it? Hospice, a "service designed in the face of advanced incurable disease." 1
In 2005, hospice served more than 1.2 million Americans through a markedly decentralized approach funded primarily through Medicare reimbursement, which began in 1983.1 As boomers age, hospice grows. Between 2000 and 2004, hospice beneficiaries grew by 49% and federal government payment increased from $2.9 billion to $6.7 billion -- a 130% increase in only four years. 1, 2, 3
In spite of the popularity of the programs, a history three decades old, and the emergence of a medical subspecialty in hospice and palliative care, the people and their caregivers have a number of misperceptions when it comes to hospice. So what are the facts you need to know?
First, what is it? Hospice is a team-based holistic approach to end of life care, primarily supported in your own home. It is designed to address the critical concerns of dying patients and their families, including dying with dignity, dying at home without unnecessary pain, and supporting the emotional, spiritual and physical needs of the patients and their caregivers. 1,4 According to experts, "The primary goal is to ensure that pain and such symptoms as insomnia, shortness of breath, depression, constipation, agitation, nausea and emotional and spiritual distress are aggressively addressed." 1
What does hospice cost? For some, hospice care at home is free. Medicare is the primary payer in 90% of cases. Some commercial plans also provide coverage. Under Medicare, all expenses related to the terminal diagnosis are covered, including medication, home equipment and visits by members of the Hospice team, 24-hour crisis management and bereavement support for the family for one year after death. 1
Who is on the hospice team? There are 4,100 local and regional hospices in the United States, and team composition varies.4 Most hospice teams include nurses, social workers, a pastoral counselor, a bereavement coordinator, a medical director and volunteers. Most clinical care is generally delivered by a hospice nurse. 1 Approximately 70% of all hospice organizations are caring for fewer than 75 patients at any on time and 35% care for fewer than 25 patients. 4 The Hospice team is paid a flat fee of $126 dollars per day for home care and $563 dollars per day if their patient is hospitalized. Crisis care visits are reimbursed at $31 dollars per hour. 97% of all reimbursement is tied to home-based care. 4
Don't you have to be dying from cancer to receive hospice? No! This is a common misconception. To qualify for hospice, your doctors "must certify to the best of their judgment that [you] are more likely than not to die within six months." 1 Medicare provides guidelines for certification but these "do not represent hard and fast requirements" and are not restricted to patients dying of cancer. Less than one half of hospice patients today suffer from cancer. Forty percent of hospice admissions are for end stage chronic disease like heart failure, chronic obstructive pulmonary disease, Alzheimer's and dementia. 4
How long before death does the average patient enter hospice? In spite of the coverage target of five months, the median length of hospice service in the United States is only 26 days. One third of all patients relieve only one week of care before death. 2 Why such late referral? There are a number of reasons. Perhaps most significant is the U.S. health care system’s bias towards curative versus palliative care. Neither patient nor physician finds accepting death an easy choice. Studies have shown the physicians often over-estimate lifespan in chronically ill patients. 5 Then there is the current Medicare daily payment system for hospice, which precludes continued reimbursement of chemotherapy, parenteral nutrition and other curative care. Then there are the misperceptions – that you must have cancer; that you will have to pay for the care; that you must sign a “do-not-resuscitate” order – all of which are untrue. 1
In 2005, one-third of the 2.4 million Americans who died were receiving hospice care. 4 Two-thirds did not. As our citizens age, we will need Hospice more than ever. One thing you can do is put the information to good use. If you or a family member is chronically ill, discuss hospice with your doctors and nurses early, not late. References
1. Gazelle, Gail. "Understanding Hospice – An Underutilized Option for Life – Final Chapter." NEJM. July 26, 2007. 357:4. p. 321-324.
2. 2005 National summary of Hospice care: Statistics and trends from the 2005 national data set and the 2005 NAPCO membership survey. Alexandria, VA. National hospice and Palliative Care Organization. November 2006:4.
3. Data from Center for Medicare and Medicaid Services and the Medicare Payment Advisory Commission (Med PAC) including Puerto Rico. Quoted in Ref. #1.
4. Wright, A. and Katz, IT. "Letting go of the rope – aggressive treatment, Hospice Care and open access." NEJM. 357:4. P.324-327.
5. American Society of Clinical Oncology: "Cancer care during the last phase of life." J. Clinical Oncology. 1998:16. 1986-96.
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