Chemotherapy and radiation had proven unsuccessful, and Jane’s ovarian cancer was in its final stages. She knew she was going to die, but didn’t want to die in the hospital. Her two young children were afraid of the huge impersonal building and there were no chairs small enough for them to sit in comfortably.

Jane’s sister had been a volunteer hospice worker and suggested that home hospice care would be Jane’s best option. A hospice medical team and a social worker assembled quickly, and a volunteer was assigned to help Jane and her family through her remaining days.

Jane spent these final two weeks at home with her family. When her children arrived from school each day, they played at a small table at Jane’s bedside. When she died, Jane was resting peacefully and her family was with her.

If someone were to ask, “How do you want to die?” chances are you’d say, “in my home, with dignity, with my family around me, and with as little pain as possible.”

And why not? Isn’t this the best option? The problem is that most of us don’t have a plan for our deaths, an “exit strategy.” As a result, nobody knows what we would want and difficult decisions must be made by grieving family members, decisions that might differ from those we would have made for ourselves.

According to a 1999 research study conducted by the National Hospice Foundation (NHF), only 24 percent of Americans age 45 or older have put into writing how they want to be cared for as they die. In fact, Americans rarely talk to anyone about end-of-life issues. It’s been documented that adults are more willing to talk with their children about safer sex than to their terminally ill parents about impending death.

What Is Hospice Care?

Whether from television, movies, or personal experience, we’re familiar with images of people dying in hospitals. These unpleasant images often include patients surrounded by hospital equipment, orange vinyl chairs, and the smell of antiseptic. For those who are no longer helped by medical care and know that death is near, it can be a frustrating and frightening setting for their final days. For many years, there were, unfortunately, few alternatives. Individuals who needed pain management needed to be in a hospital. Family members were not qualified to provide injections, check fluid levels, or fully attend to the needs of a terminally ill loved one.

The word “hospice” is derived from the Latin word “hospitium” meaning guesthouse. Initially, it referred to a resting place for weary or ill travelers returning from religious pilgrimages. The modern hospice movement began in the 1960s when British physician Cicely Saunders began utilizing a team approach to care compassionately for the dying at St. Christopher’s Hospital near London. The first American hospice was founded in New Haven, Conn. in 1974.

“Hospice” is not a place; it’s a concept of care that offers comfort and, ultimately, a dignified death for individuals with chronic illnesses that no longer respond to treatment. Eighty percent of hospice care is provided in homes and in nursing homes. There are also hospice wings in many hospitals.

People choose hospice care for a variety of reasons. When one is experiencing an end-stage illness and in great pain, hospice offers the opportunity to maximize one’s quality of life, even to the end of life. The setting, if not the individual’s own home, is nonetheless “homey.”

The hospice care team is available 24 hours a day, seven days a week. Members of that team usually include:

• The individual’s personal physician;
• A hospice physician or medical director;
• Nurses;
• Home health aides;
• Social workers;
• Clergy or mental health counselors;
• Trained volunteers; and
• Speech, physical or occupational therapists if necessary.

A “care plan” is created for each individual attended to by a hospice group. Central elements of the care plan address the individual’s pain management and symptom control. The plan also details scheduling, nursing, personal care (such as bathing and dressing), as well as social services and necessary medical equipment.

Although 80 percent of respondents to the NHF survey indicated that they did not know the meaning of the term “hospice,” the movement has grown steadily. There are currently over 3,000 hospice programs in the U.S. and, in 1999, over 700,000 people were cared for in hospice settings.

As with any major medical service, it is important to evaluate the credentials and professionalism of the provider organization. Decisions regarding care must be made carefully. There are questions that need to be asked and answered when choosing a hospice for yourself or a loved one.

There are many excellent Web sites out there offering information as well as chat and support groups for ill people and their care providers. “Hospice Net” has developed a comprehensive listing of questions to ask when deciding on a hospice program. The questions include essential issues, such as whether the agency is approved by a national accrediting organization, the flexibility of the program’s admission policies, and the rights of individuals and families choosing hospice care.

Living As We’re Dying

Hospice care helps people to live while they’re dying. Social workers and counselors provide emotional support. Physicians and nurses offer medical assistance and pain management. Volunteers extend friendship, fluff pillows, rearrange flowers, read to the individual or simply hold hands. Family members and primary caregivers are able to take breaks from the physical and emotional exhaustion that results from watching a loved one die, knowing that comfort and care will be provided in their absence.

National Hospice Month is an event worth celebrating. By making the process of dying more comfortable and dignified, the hospice movement has extended the values by which we live to the process by which we die.

Resources

The Hospice Foundation of America is a not-for-profit organization that provides information regarding all aspects of end-of-life care.

The National Hospice Foundation was created to “broaden America’s understanding of hospice through research and education.”

Hospice Net is an outstanding site, offering a section on questions to ask when deciding on a hospice program.

Hospice Ring was designed to bring together hospice care providers to share experiences and to learn from one another.

    Last reviewed: By John M. Grohol, Psy.D. on 19 Oct 2006
    Published on PsychCentral.com. All rights reserved.