Each day thousands of people across the country receive beneficial care and support from hospice and palliative care providers in hospitals, senior living communities, assisted living facilities, nursing facilities, hospice residences or at home. Yet most individuals do not understand all the unique services offered by hospice and palliative care providers and when to access these services.
Since 1974 more than 13 million people and their families have been served by the nation’s hospices. Considered to be the model for quality, compassionate care, hospice involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Unlike most health care, expert support and caregiver training is provided to the patient’s loved ones, enabling them to cope with the impending death of the hospice patient and meet the care needs of their family members or friends.
As described by the National Hospice and Palliative Care Organization’s (NHPCO) Caring Connections program, hospice care is predicated on the belief that each of us has the right to die pain-free and with dignity, and that our loved ones should receive the necessary support to allow us to do so. The following is a general summation of hospice:
- Hospice focuses on caring, not curing—with care most often provided in the person’s home.
- Hospice care is provided in freestanding hospice centers, hospitals and nursing homes as well as in other long-term care facilities.
- Hospice care is covered under Medicare, Medicaid, most private health insurance plans, HMOs, and other managed care organizations.
- Hospices provide care to people with a wide range of life-limiting illnesses and conditions.
It was once felt that hospices served cancer patients almost exclusively—but those days have long since passed. Hospice is reaching out to care for people with a broader range of diagnoses, as NHPCO 2008 data shows (see chart).
Most people equate hospice with so called “brink of death care,” or care that is provided in the final days or hours of life. The Medicare Hospice Benefit, which in some ways has come to define hospice care, states that people can access hospice when their life expectancy, should the disease run its natural course, is six months or less. It does not state that people can only have hospice for six months or less. As long as the hospice physician certifies that the person is likely to die within six months, someone can receive hospice services. Each year hospices serve people for eight, 12 or even 18 months, depending upon their prognosis.
Research shows that physicians typically believe that people will live longer than they actually do, resulting in very late referrals to hospice. The 2009 edition of NHPCO’s “Facts and Figures: Hospice Care in America” reports that 35.4 percent of those served by hospice died or were discharged in seven days or less and the median length of service was 21.3 days of care.
The hospice focus on holistic relief of suffering has led to an increased focus on a new medical specialty called palliative medicine. To “palliate” means to make comfortable by treating a person’s symptoms from an illness. Hospice and palliative care both focus on helping a person be comfortable by addressing underlying issues causing physical or emotional pain or suffering. The goals of palliative care are to improve the quality of a seriously ill person’s life and to support that person and their family during and after treatment.
Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months, not years, and their families. However, palliative care may be given at any time during a person’s illness, from diagnosis on.
The Centers for Medicare and Medicaid Services defines palliative care as “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.”
Palliative care can be provided in any setting and is often, but not always, provided by a team including a physician, nurse, social worker and spiritual care provider. The Center to Advance Palliative Care, (CAPC), a national organization dedicated to increasing the availability of quality palliative care services, states that the number of hospital-based palliative care programs has doubled over the last six years. To date, there are approximately 1,300 hospitals with a palliative care program. CAPC data further shows that approximately 53 percent of all hospitals with more than 50 beds have a palliative care program today while an estimated 58 percent of all children’s hospitals have a palliative care program.
Unlike hospice, which has an established core set of services and a Medicare reimbursement rate, which is often used by health plans as the basis of contractual arrangements for hospice, palliative care is reimbursed in different ways based on the care setting and the care provider.
The chart below answers questions regarding the similarities and differences between hospice and palliative care, according to the NHPCO.
The Palliative Care Continuum
In an ideal situation a person diagnosed with a chronic or life-limiting illness would be referred for a palliative care consultation at the first onset of pain or other symptoms related to either the diagnosis or treatment protocol. Palliative care can be offered throughout an illness trajectory through referral to hospice and death. Following the death of the patient, the hospice would continue to offer bereavement support to the family.
Today most people living with a serious chronic or life-limiting illness or injury don’t access any palliative care services unless they are in a hospital with a palliative care program or are referred to hospice for traditional hospice care or what’s sometime referred to as “pre-hospice” palliative care. NHPCO is working with CAPC and other organizations that work with long-term care, acute and home and community service providers to offer the continuum of palliative care to people in all care settings, earlier in their disease progression. NHPCO is also working with health insurance plans to educate both payers and providers about innovative models to meet the palliative care needs of patients earlier in their illness.
To find a hospice or palliative care provider, visit NHPCO’s consumer information website www.caringinfo.org or call the HelpLine at 800-658-8898.
Kathy Brandt, MS, is the Vice President of Innovation and Access at the National Hospice and Palliative Care Organization, leading NHPCO’s state leadership, discipline-specific and interdisciplinary networking. She has worked on national end-of-life initiatives for more than 19 years. (firstname.lastname@example.org)