Hospice: the move to a quality of life

By Sun Advocate

In much of the health care system in the United States the emphasis of health care is toward prolonging life as long as possible, regardless of the cost, and sometimes regardless of the discomfort to the patient.
But in one segment of the health care industry, hospice, the emphasis is on the quality of life, not the quantity, because generally the patients in that area of health care deals often have only a very limited quantity of life left.
Hospice is a concept of caring derived from the middle ages, symbolizing a place where travelers, pilgrims and the sick, wounded or dying could find rest and comfort. The contemporary hospice offers a comprehensive program of care to patients and families facing a life threatening illness.
In most modern medicine there is a place where people go to have their medical care; doctors quit doing house calls many years ago. The physician’s office, a medical center, a clinic or the hospital are common places sick patients have to travel to.

But hospice is not a place. It is primarily a concept of care, not a specific place of care.
Hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The dying are comforted. Professional medical care is given, and sophisticated symptom relief provided. The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient’s wishes and family’s needs. Trained volunteers can offer respite care for family members as well as meaningful support to the patient. That is all important when a loved one is very ill.
Hospice affirms life and regards dying as a normal process, not necessarily something that should be put off at all costs. Hospice neither hastens nor postpones death. Hospice provides personalized services and a caring community so that patients and families can attain the necessary preparation for a death that is satisfactory to them.
Those involved in the process of dying have a variety of physical, spiritual, emotional and social needs. The nature of dying is so unique that the goal of the hospice team is to be sensitive and responsive to the special requirements of each individual and family.

Hospice care is provided to patients who have a limited life expectancy. Although most hospice patients are cancer patients, hospices accept anyone regardless of age or type of illness. These patients have also made a decision to spend their last months at home or in a home-like setting.
Hospice care is not just about doctors and nurses providing home health care, it is about an entire care package of specialists who help the patient and the families through a very hard time. It is a team approach that typically includes a physician, a nurse, a home health aide, a social worker, a chaplain and a volunteer.
The hospice nurse makes regularly scheduled visits to the patient providing expert pain management and symptom control techniques. Throughout the time that the patient is under the care of hospice, the nurse keeps the primary physician informed of the patient’s condition. Nurses provide the complete spectrum of skilled nursing care and are available 24 hours a day, seven days a week.
Home health aides provide assistance with the personal care of the patient.
Social workers provide assistance with practical and financial concerns as well as emotional support, counseling and bereavement follow-up. They evaluate the need for volunteers and other support services needed by the family and facilitate communication between the family and community agencies.
Chaplains provide spiritual support to patients and families, often serving as a liaison between them and their religious community. Chaplains often assist with memorial services and funeral arrangements.
While there are many professionals involved in the care of someone who has a terminal situation, volunteers are one of the big keys in hospice care.
The hospice concept and movement has grown out of the commitment and vision of thousands of volunteers.
Traditionally, volunteers have been the backbone of the hospice movement and are still an indispensable part of any hospice program. Even the federal government recognizes the importance of volunteers in the delivery of hospice care by requiring that Medicare-approved hospices utilize volunteers from their community. Nationally, about 100,000 people serve as hospice volunteers and give millions of hours of their time to serve terminally ill patients and their families.
Volunteers serve as members of hospice teams by sharing skills and interests in a manner that provides comfort and enriches the quality of life for those served.
Volunteers serve on a regularly scheduled basis and provide many kinds of services.
•Support services. Companionship, friendly visiting, active listening, bedside sitting and letter writing.
•Sharing hobbies and special interests. Reading, gardening, listening to music, sports, travel, crafts, etc.
•Assisting with errands – grocery shopping, picking up prescriptions and supplies and banking.
•Transporting patients and families. Volunteers often take people to appointments, shopping and social outings.
•Homemaking tasks. They perform light housekeeping, dishes, laundry, meal preparation and childcare.
No task is too big or too small for a hospice volunteer, but often the most important thing volunteers can do is just “be there” for patients to reassure them they are not alone, to hold a hand, to offer a smile, or to just listen.
It is not easy work, but the personal rewards are enormous. The strength and courage of patients provide a constant source of inspiration, and volunteers usually feel they gain more than they have been able to give.
Other volunteers provide help with special projects, mailings, reception, clerical support or working with special events such as memorial services and fund raising events.
Hospice volunteers often express their work with patients and families as a blessing. The inner knowledge and satisfaction a volunteer receives from knowing they’ve made a real difference in the life of a patient or family is what makes being a hospice volunteer special. Many say that being invited into the last months, weeks, and days of a person’s life is an honor and a privilege.