by Naomi Naierman and Johanna Turner
The late 1970s and early ‘80s introduced the hospice concept, a new paradigm for American healthcare. Now operational in nearly every community in the nation – there are more than 4,500 hospices – over one-third of all deaths are served by hospices. It would be easy to assume that everyone knows about hospice, but since dying is a difficult subject for many, even those who receive hospice care may be learning about it on the spot, and many will never hear the hospice message. Employee assistance and human resource professionals have an opportunity to share a remarkable resource for workers burdened with end-of-life care decisions.
Everyone is aware that healthcare and its reimbursement systems face change; many may be anxious about the care they or their loved ones might need. As our population ages and job security (with its healthcare benefits) seems shaky, workers’ apprehensions are compounded. Reassuring answers can be as close as the local hospice.
If you are not sure about the hospice concept, here are the facts: Hospice has been part of the healthcare continuum for over 30 years. The values and choices of patients and their families guide hospice care. Interdisciplinary teams of skilled professionals and trained volunteers provide physical, emotional and spiritual comfort to persons with any life-limiting illness. Whenever possible, hospice care is provided at home, but it may also occur in inpatient settings or long-term care facilities. Hospice supports the patient’s family in their caregiving and in their grief after a death.
As they aide employees, HR managers and EAP professionals can turn to their local hospice programs for help in a number of areas.
Hospices are a proven resource for families facing end-of-life decisions. When families face serious, progressive illness, employees may struggle with wrenching questions. What are my choices for care and treatment? How do I know whether an intervention is a burden or a life-enhancing benefit? Hospices help with questions about treatment, nutrition and resuscitation every day, offering information for decision-making within each family’s values.
Dying is sometimes seen as a lonely time of pain and suffering. This need not be true. Employees will be grateful to know that the hospice alternative offers comfort and dignity until life’s end. “Dying does not have to be agonizing,” says respected palliative care physician Ira Byock, M.D. In “Dying Well: The Prospect of Growth at Life’s End,” Byock notes that “pain and other symptoms of discomfort associated with terminal illness can always be alleviated. The notion that some physical pain associated with dying cannot be made more tolerable is simply untrue.”
Hospices provide affordable quality care, offering real value to both patients and insurers. While Medicare, Medicaid and virtually all insurance plans have hospice benefits, many Americans have inadequate insurance or may not be insured at all. The expense of healthcare at life’s end can potentially impoverish many families, but hospice care greatly reduces that financial burden. Employees will be relieved to know that insurance coverage or ability to pay are not factors in receiving care.
The Medicare Hospice benefit is great news for seniors. Whether at home or in an inpatient setting, all services, treatments, supplies and equipment that are part of the hospice care plan are fully covered, with a minimal co-payment for prescription drugs and respite care. Most states have a similar hospice election for Medicaid recipients. Patients and their families who elect hospice care do not even file the claims. And when benefits managers insist on health plans that include a hospice benefit, significant cost savings are realized.
Hospices offer services and options to make each day the best it can be – for the patient and the caregiver. Where can my loved one be cared for? What help is available in my community? Who can teach me what I need to know? Most people believe it is their responsibility to care for a dying family member. With the help of hospice professionals and volunteers, employed family members often manage to continue working while caring for their loved one at home.
Unlike standard home health care that decreases services over time, hospice services may become more intensive as the disease progresses. Hospice nurses, physicians and aides teach family caregivers the skills they need, 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. Patients can receive the full spectrum of hospice home care services, only their “home” is in a facility. A growing number of hospices also have established inpatient centers for residential or acute care, further expanding caregiving options. New options continue to evolve as hospices strive to meet changing needs.
Workplace productivity and employee well-being can be 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 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, if requested.
When employees face the loss of loved ones, or when an employee becomes seriously ill or dies, the workplace is undeniably affected. Hospices can help workers cope with these losses through their 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. Many hospices are non-profit agencies that depend on strong financial support, and all hospices require a large volunteer force. Businesses gain the community’s appreciation when they provide financial assistance or engage in mutually beneficial corporate-hospice partnerships. Encouraging employees to become hospice volunteers strengthens the company’s image. Everyone benefits when businesses are stakeholders in the community’s well-being.
What you can do to learn more:
- If you do not receive 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 skilled and compassionate care for patients and their loved ones. It 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 60 percent of hospice patients nationwide have diagnoses other than cancer, usually the end-stages of chronic diseases and dementias.
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 illnesses are alone. These hospices work to coordinate community resources that can 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 illnesses, they support the individual values of each person served. As 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, http://www.nhpco.org and http://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 many years of experience in end-of-life care.
This article is an updated adaptation of one under the same title that appeared in EAPA Exchange on July-August 1997.