Hospice…What It Is and What It Isn’t

By: Jan Kostielney Last Updated: August 11, 2010

Hospice is a concept that is feared and misunderstood more often than not. The hospice providers in this area hope that the following information will help people understand the concept more fully.

Hospice is not a place…it is a way or providing care wherever the patient is: at home, in an assisted living complex, in a long-term-care nursing facility, or any other appropriate location.

Hospice is not a ‘death bed’ service for people in the last 48 hours of life. It is a comprehensive care program for patients and families, which emphasizes quality of life and is most effective during the final 6 months of life expectancy. If a patient remains “hospice appropriate” after six months, they can be recertified and remain on hospice services. Some patients, because of the increased care and support they receive through hospice services, become well enough to leave hospice services. Of course, when they need hospice in the future, they are accepted back into service.

Hospice affirms life…it offers a positive response to dying. It provides an individualized program of physical, emotional, spiritual and practical care for people in the last phases of an incurable disease, and the hospice concept places an emphasis on control of pain and other symptoms. It is the best of traditional medicine blended with an awareness of the complexity of the human spirit.

Hospice providers use an interdisciplinary team approach of physicians, nurses, social workers, homemakers, home health aides, volunteers, spiritual counselors, bereavement counselors and others to provide comfort care in the patient’s residence.

Comfort of the patient is one of the prime reasons for hospice – and it is also one of the reasons for its popularity. People prefer to die at home in the comfort of familiar surroundings. The patient in distress is not the only one suffering; the family suffers as well. One of the basic tenets of hospice care is the treatment of patient and family together. Death in acute-care institutions has provoked a ‘coming apart’ for many families; hospice helps to make death a ‘coming together.’

Caring for the patient at home (whether that is an individual’s house or their room in a skilled nursing facility) also affords the survivors in the family protection from the hazards of bereavement. It is beneficial for relatives to witness the dying process and not be frightened of it. Anyone who has been present during a peaceful death will fear his own mortality less. The bereavement process cannot be avoided or curtailed, but it can be satisfactorily resolved by continuity of care.

Hospice focuses on caring…not curing…and acknowledges death as a normal event. Hospice philosophy seeks to help families realize that death is as normal to life as is birth.

Hospice is not just for cancer patients; in fact, in 2008, only 38.3% of all hospice admissions were cancer patients. Hospice is available to patients of any age, race, sex or religion who have a disease in its final stages.

Hospice neither hastens nor postpones death. The hospice philosophy, regardless of the company providing the services, does not support euthanasia nor does it support prolonging life unnecessarily. Rather, the hospice philosophy encourages control over treatment, pain and symptom management so that the patient can die naturally with physical, spiritual and emotional comfort.

Hospice is not a resignation to hopelessness and helplessness. It is a way to deal realistically and humanely with one of the great challenges of human life, and it offers new perspectives on hope and help to patients and their families.

Hospice is not expensive. It is an alternative system that emphasizes cost-savings by keeping the patient at home, cared for by the family. Hospice services [through 93.5% of all agencies] are covered 100% by Medicare and Medicaid and many private insurance companies. No patient is ever denied care because of an inability to pay.

Now that we’ve discussed the concept of hospice, let’s look at some more statistics from the National Hospice and Palliative Care Organization [NHPCO](www.nhpco.org).

In 2008, the date of the last reporting completed, about 1.45 million patients received services from hospice. This estimate includes 963,000 patients who died under hospice care in 2008; 276,000 patients who remained on the hospice census at the end of 2008; and 212,000 patients who were discharged alive in 2008 for reasons including extended prognosis, desire for curative treatment and other reasons.

NHPCO estimates that, in 2008, approximately 38.5% of all deaths in the United States were under care of a hospice program.

The first hospice program opened in 1974; today, according to NHPCO, there are 4,850 hospice program offices in the United States. Hospice programs range in size from small all-volunteer agencies that care for fewer than 50 patients per year to large, national corporate chains that provide care for thousands of patients each day.

Let’s talk a bit about volunteers. The U.S. hospice movement was founded by volunteers, and there is continued commitment to volunteer services. NHPCO estimates that in 2008, 550,000 hospice volunteers provided 25 million hours of service. Hospice volunteers provide service in three general areas: direct patient care [spending time with patients and families]; providing clerical and other services that support patient care and clinical services; and helping with fundraising efforts.

Hospice is unique in that it is the only type of service whose Medicare Conditions of Participation requires volunteers to provide at least 5% of total patient care hours. In 2008, 6% of all clinical staff hours were provided by volunteers. The typical hospice volunteer devoted 46.8 hours of service over the course of a year, and patient care volunteers made an average of 20 visits to hospice patients.

To find a hospice services provider…or to become a volunteer, visit NHPCO’s website and click on “find a provider.” In Indiana, there are many providers, most of which have service coverage in multiple counties. For example, offices which are located in Valparaiso or South Bend typically provide services across northwest Indiana.

Submitted by:
Janet Kostielney, AseraCare Hospice
Kimberly Lintner, Center for Hospice
Jill VanDeWalle-Hoffman, Harbor Light Hospice
Carol Pacione, St. Anthony Hospice