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.