What is Hospice Care?
Hospice provides support and care for persons in the last phases of incurable diseases so that they may live as fully and comfortably as possible. Recognizing death as part of the normal process of living, hospice focuses on maintaining the quality of remaining life, neither hastening nor postponing the inevitable. Hospice exists in the hope and belief that through appropriate care--and the promotion of a caring community sensitive to their needs--patients and their families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them.
A hospice program provides comforting care to terminally-ill patients and supportive services to patients, their families, and significant others 24 hours a day, seven days a week, in both home and facility settings. Physical, social, emotional, and spiritual care are provided during the last stages of illness, the dying process, and bereavement by a medically directed interdisciplinary team consisting of patients, families, professionals, and volunteers.
When a family member or caregiver contacts a hospice, the director of the center will call the patient's doctor to verify his condition. If all information is accurate, the hospice will proceed with care for the patient. In any case, patients must have a terminal diagnosis to receive hospice care. In some instances, an individual who has no family will desire hospice care. In this situation, the hospice has two options:
- If the patient is able-bodied and independent, the hospice will treat the patient in the home.
- If the patient is bed-ridden, the hospice will send them to a hospice-operated, in-patient facility, or work with a nearby nursing home or hospital on a contractual basis to care for the patient. When home care is unavailable, hospices try to provide as close to a home-like setting as possible for the patient.
The Hospice Care Approach
The primary goal of hospice care is to manage or control pain and alleviate the fears most commonly associated for a person with a terminal illness. In fact, the patient is involved in the decision-making process for choosing how they would like to be treated for their pain. In the majority of cases, most medication is given orally to avoid the discomfort injections would cause the patients. Some of the fears hospice care addresses include:
- Fear of pain related to the illness
- Fear of becoming a burden to the family
- Fear of financing the cost of a terminal illness
The hospice team of doctors, nurses, psychologists, spiritual counselors, and volunteers provide such everyday support services as administering medication, lending equipment, shopping, cleaning, and running errands for the patient. The hospice staff can be reached 24 hours a day and will visit a patient when needed, whether night or day.
Availability of Hospice Care
Those seeking hospice care for a friend or relative can find a listing in their local telephone directory's yellow pages. However, most people find out about a particular hospice through a friend, neighbor, or family member who has experienced hospice care. Other ways to obtain information about hospice care is through a pastor, a physician's referral (which is the only way Canadian residents may obtain hospice care), newspaper advertisements, and community club presentations (i.e., Kiwanas, Rotary, local library, and others).
There are more than 200 hospices in the United Kingdom and Ireland, and 2,000 hospice programs in the United States with more than 33,500 full-time staff members. Great Britain is now the leading country for palliative care training and treatment.
How Hospice Prepares the Family
Hospice care does not only care for the individual, but for the family, as well. Here are some of the ways hospices help the families care for patients in the homes:
- The hospice staff walks through the realistic needs of the patient, such as a hospital bed, commode chair, or walker. The hospice also tries to fulfill the heartfelt needs of the patient, no matter how big or small.
- Hospice nurses serve as go-betweens for the patient and his or her doctor. The hospice also teaches the family how to administer pain medications. Patients aren't required to make office visits.
- The hospice instructs the family that taking care of the patient must be a team effort among all family members.
- The hospice team encourages the family to surround themselves with a network of support from friends and church members.
- The hospice encourages the family to reminisce and take time out for light-hearted moments with the patient. The family is also urged to express their true feelings about what is happening.
- The hospice doctor instructs the family how to react (i.e., who to call first) when the person passes away, as well as what the patient will look like. This training with the family leaves the family with a sense of empowerment. · Volunteers work with the family to give them breaks and to run errands for the family or the patient. Volunteers also offer companionship to the patient, especially if they are in a facility.
- The hospice also helps the family plan the funeral (which volunteers and staff members often attend), sends cards and letters, and offers continuing psychological and spiritual counsel to the family for as long as needed.
The Cost of Hospice Care
Hospice care is the most cost-effective way of caring for a terminally-ill person. In the U.S., the approximate estimated cost for hospital care is $1,756 per day, $284 per day at nursing facilities, and averages about $100 per day for at-home hospice care and $200 per day in a private facility. Hospice care is covered under Medicare, Medicaid (in some states), most private-insurance groups, and HMOs. Families may be asked to meet some uncovered costs. However, hospices rarely, if ever, turn down patients for financial reasons. Public and community support through donations, grants, memorial gifts and fund-raising events assist to help cover the cost of care.
How You Can Get Involved
Volunteers are a hospice's life-blood and keep the facility running in an efficient, caring manner. To become involved with hospice care:
- Contact your local hospice and find out how you can become a volunteer. Volunteers are fully trained by the hospice.
- Or, if you know a patient in your church, business, or neighborhood, you can assist the patient and their family on your own.
Other Practical Suggestions:
- Listen
- Pray
- Write letters or thank you notes for the patient
- Bake cookies for visitors
- Prepare a basket of teas and coffees
- Buy and/or wrap Christmas and birthday gifts
- Run errands
- Do the laundry and dishes
- Clean or vacuum the house
- Provide a meal
- Help take care of the lawn and weed flower beds
- Help write the patient's memoirs
- Send flowers
- Read to the patient
- Visit the patient to relieve care-giver
Resources:
The following resources may be helpful to you as you pursue the area of hospice care, whether as a patient or volunteer. Contact FOF for the following:
Audiocassette
"Hope for the Seriously Ill" (Guest: Dr. Margaret Cottle) Available for a suggested donation of $7 (U.S. and Canada). CS980/16934
Booklet
"When Someone You Love is Terminally Ill" by Robert Hromas, M.D. Complimentary. LF215/8207
Information Sheet
Cancer Resource List Complimentary. FX231/3578
Book and Book-on-Cassette
When God Doesn't Make Sense by Dr. James Dobson (Tyndale Family Publishers) Available for a suggested donation of $19 for the book and $17 for the book-on-cassette (in Canada, $25 for the book and $27 for the book-on-cassette). BK062/BT025
Additional Resources
Please note that the following are listed for your information only, and that their appearance on this information sheet does not in any way constitute an endorsement by FOF. We strongly suggest that you personally evaluate these resources and their materials prior to initiating involvement.
Books
Fear No Evil by David Watson (Harold Shaw)
Ready to Live: Prepared to Die by Amy Harwell (Harold Shaw)
My Turn to Care: Affirmations for Caregivers of Aging Parents edited by Marlene Bangull (Thomas Nelson)
Organizations:
U.S. National Hospice Organization
1700 Diagonal Road
Suite 300
Alexandria, VA 22314
Hospice HelpLine 800/658-8898
[Monday through Friday, 9-5 (Eastern Time)]
Canadian Palliative Care Association
5 Blackburn Avenue
Ottawa, Ontario
K1S 4B6
613/241-3663
Dave Dravecky's Outreach of Hope
A ministry dedicated to offering hope, comfort and encouragement through Jesus Christ to those who suffer from cancer or amputation. They offer personal contact, correspondence, prayer support, phone support, resource referral, and gifts of encouraging literature. Write:
Dave Dravecky's Outreach of Hope
13840 Gleneagle Drive
Colorado Springs, CO 80921
Carrie Gordon Earll is the Senior Policy Analyst for Bioethics at Focus on the Family and a fellow with the Center for Bioethics and Human Dignity.
