With the proliferation of more than 2,500 hospice programs in communities across the nation, the hospice concept of caring has a well-deserved reputation for compassionate service to the terminally ill. Hospices serve the business community as well, providing information and resources for making critical health decisions, planning comprehensive care, and counseling for all aspects of grief.
American workers, aware of recent changes in healthcare reimbursement systems, may be anxious about the care they or their loved ones might need. The attention currently focused on assisted suicide and quality at life's end may heighten these concerns. As citizens age and as job security (with its healthcare benefits) decreases, workers' apprehensions are compounded. Employee assistance programs need to provide reassuring answers, which can be as close as the local hospice.
The hospice concept of care has been part of the healthcare continuum for 20 years. At the foundation of hospice care are interdisciplinary teams of skilled professionals and trained volunteers that provide physical, emotional and spiritual comfort to persons with life-limiting illness. Whenever possible, hospice care is provided at home, but it can also be available in inpatient settings or long-term care facilities. Key to the hospice philosophy is the support of the patient's family in giving care and in the grieving that continues after death. The values and choices of the patient and family are respected.
But the depth and breadth of hospice expertise are often underutilized. Human resource managers and employee assistance professionals can turn to their local hospice programs for help in a number of areas.
Hospices offer experienced counsel to families making end-of-life decisions. When facing serious, progressive illness in the family, employees may struggle for answers to wrenching questions. What choices in care and treatment are available? How do we know when treatments are a burden rather than a benefit? Hospices help families face these questions every day. In the absence of living wills or other advance directives, family members are often asked to make decisions about treatment or resuscitation; hospice professionals offer information and guidance to make decisions that are consistent with each family's values.
With national attention on Dr. Jack Kervorkian and those who would hasten life's end, the media often portrays dying as a lonely time of pain and suffering. Employees can be comforted in knowing that hospice is an alternative that offers comfort and dignity until life's end. "Dying does not have to be agonizing," says noted palliative care physician Ira Byock, M.D. Writing in the newly released Dying Well: The Prospect of Growth at Life's End, Byock says: "A person's dying may not be easy, but what of value in life is? Similarly, caring for our loved ones as they die is simply part of full and healthful living."
Hospices provide affordable access to quality care and offer significant value to both clients and insurers.
While Medicare, Medicaid, and virtually all managed care or fee-for-service plans have hospice benefits, many Americans have inadequate insurance, or may not be insured at all. The expense of healthcare at the end of life can potentially impoverish many families, but hospice care can greatly reduce that financial burden. Employees will be relieved to know one of the tenets of hospice care: all appropriate patients are served, regardless of ability to pay.
For those who seek care for Medicare beneficiaries when life expectancy is six months or less, the Medicare Hospice Benefit is good news. Medicare offers a hospice election that is separate from its other reimbursement structures. All services, medications, treatments, respite care, supplies and equipment which are part of a hospice plan of care are fully covered, with a minimal co-payment for prescription drugs and respite. Patients and their families who elect hospice care do not even need to file claims. Most states have a similar hospice election for Medicaid recipients, and CHAMPUS benefits are structured in the same way.
When benefits managers insist on health plans that include a well-defined hospice benefit, significant cost-savings are realized. According to the 1994 Statistical Supplement to the Social Security Bulletin, charges for one hospital day averaged $1,756, and one day in a skilled nursing facility averaged $284. The routine home care charge for one day of hospice was $91. Hospice rates have risen at a fraction of the increase in fees for other care since that time. A 1994 Lewin-VHI study estimated that for every dollar spent on hospice care, $1.52 was saved in more expensive care.
Hospices offer practical help in managing day-to-day living and compassionate alternatives when home care is not possible.
Where can my loved one be cared for? What help is available in my community? Who can teach me what I need to know? According to a 1996 Gallup poll, nearly 90 percent of surveyed adults believe that it is the family's responsibility to care for the dying. With the help of hospice professionals and volunteers, employed family members often manage to continue their work while caring for their loved one at home, thanks to the resource management for which hospices are known.
Unlike standard home health care which decreases services offered at the time of program admission, hospice services become more intensive over time. Hospice nurses, physicians and aides teach the necessary skills for care while social workers and chaplains provide emotional and spiritual support. Twenty-four hour on-call availability and a network of extraordinary volunteers provide a safety net. All hospices offer volunteers to run errands, give family caregivers a break, and provide an extra set of hands or a listening ear.
When home care is not an option, many hospices have contractual agreements with selected nursing or assisted living facilities. These patients receive the full spectrum of hospice home care services, only their "home" is in a facility. A growing number of hospices have established inpatient centers for residential or acute care, further expanding caregiving options. New programs, such as day hospice care, are continuing to evolve as hospices strive to meet changing needs.
Workplace productivity and employee well-being are enhanced when hospices are used for patient care or bereavement support.
When employees are confident that the needs of their loved ones are being met, workplace attendance and performance are potentially maximized. Hospice clinicians help family members understand disease processes and prepare them for expected changes, making certain that appropriate medications, supplies and personnel are available to meet the need. Hospice staff members can even interface with supervisors or co-workers, when requested.
Likewise, when employees face the loss of loved ones, or when an employee becomes seriously ill or dies, the workplace is affected (The Grieving Employee, EAPA Exchange September/October 1996). Hospices can help workers cope with these losses through hospice bereavement programs; they can also provide experienced training and advice for managers and employee assistance counselors.
Hospice programs offer businesses a valuable opportunity for community service.
Most hospices are non-profit agencies that depend on strong support. Businesses can gain the public's appreciation by providing financial assistance or engaging in mutually beneficial corporate-hospice partnerships. Encouraging employees to become hospice volunteers strengthens the company's image. Being a stakeholder in the region's well-being is good for the employee, the company, and the community.
What you can do to learn more:
- If you are not receiving mailings from a local hospice program, call and ask for brochures and newsletters. Share these materials with employees.
- Request a hospice speaker to address your management team, human resource office or employee assistance staff.
- Make sure that company healthcare benefits include adequate hospice coverage. Your local hospice can help you review this benefit.
MYTHS OF HOSPICE CARE
MYTH: Hospice is a place.
Hospice is a concept of care for patients and their loved ones that accepts death as the inevitable conclusion to life's journey. Hospice care takes place wherever the need exists -- usually the patient's home.
MYTH: Hospice is for old people.
Although the majority of hospice patients are older, hospices serve patients of all ages. Many programs offer clinical staff with expertise in the unique issues of pediatric hospice care.
MYTH: Hospice cares only for people with cancer.
More than 30 percent of hospice patients nation-wide have diagnoses other than cancer. In urban areas with a high incidence of HIV/AIDS, hospices were early leaders in compassionate care and support. And growing numbers of families coping with the end-stage of chronic diseases, like emphysema, Alzheimer's, cardiovascular and neuromuscular diseases are choosing hospice.
MYTH: Hospice can only help when family members are available to provide care.
Although some hospices require family caregivers in the home, other programs recognize that many persons with terminal illness are alone. These hospices endeavor to coordinate community resources to make home care possible, or they help the patient find an alternative location to receive care.
MYTH: Hospice is expensive.
Because hospice care is people-intensive and spares no means of ensuring patient comfort, it can be expensive care to provide. It is affordable care to receive, however, thanks to existing benefits and community support.
MYTH: Hospice is for people who don't need a high level of care.
Hospice is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with expertise in symptom control. Hospices offer state-of-the-art palliative care, using advanced skills and technologies to prevent or alleviate distressing symptoms.
MYTH: Hospice is for people who can comfortably talk about death.
While hospice professionals help patients and their families understand and accept the course of illness, they believe in the individuality of each person served. While those affected by terminal illness struggle to come to terms, hospice gently helps them find their way at their own speed.
To locate hospices in your community, the National Hospice and Palliative Care Organization (NHPCO) and the National Association for Home Care both maintain locators on their websites, www.nhpco.org and www.nahc.org, respectively. NHPCO offers the Hospice Helpline at 1-800-658-8898.
NAOMI NAIERMAN is president and CEO of the American Hospice Foundation, a national non-profit serving those who face life-limiting illness and significant loss. The Washington, D.C. based foundation advances the hospice concept of care through educational outreach and consumer-oriented research.
JOHANNA TURNER is a writer and consultant with fifteen years experience in hospice care. She is principal of Said & Done, Oakton VA.
© 1999. American Hospice Foundation. All Rights Reserved.
This article is an adaptation of one under the same title that appeared in EAPA Exchange on July-August 1997.
To help us offer more free articles like these, please donate to the American Hospice Foundation. For more information on hospice, grief and end-of-life issues, contact the American Hospice Foundation at 800-347-1413 or email
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