A Light of Comfort in the Darkness

The word Hospice has been around since medieval times; it was the name given to a place of rest for weary travelers; a refuge for pilgrims during the crusades. Today, hospice refers to a very special type of treatment for those in the final stages of life. It is no longer a place, but a philosophy and a style of care. At the beginning of the 20th century, more than 80 percent of Americans died at home in familiar surroundings and cared for by family and friends. Today, four out of five die in a hospital intensive care bed, attended by professional strangers. It has been estimated that more than 2/3 of the Medicare annual budget is expended during the last six months of life. The reasons for this profound shift in the manner and methods by which we have chosen to die are numerous, but most of us know, all too personally, that the costs are staggering. In the 1980’s, when I first worked with hospice, costs for the hospice in the home were approximately $72/day, while a hospital room could run close to $1000/day or much higher if in an intensive care unit. The National Hospice Association stated in 1998 that the daily cost for Medicare for skilled nursing home care was $426 versus $111 for hospice. About 90% of hospice care is based in the home. Hospice care, also, is provided in hospitals, nursing homes and other long term care facilities.

A new wave of awareness began at last to change from our society’s death-denying beliefs into some positive ways. Pioneers such as Dr. Cicely Saunders (St. Christopher’s Hospice, July 1967 in London) and Dr. Elisabeth Kubler-Ross(in 1979, New Haven, Connecticut Hospice, Inc.) have brought the subject of dying into the open and have helped us to learn more about death and dying. In February, 1998, the first patient was admitted to Hospice Austin’s Christopher House, the only inpatient hospice facility in Central Texas at that time.

The patient needing hospice care may be recommended by a physician, a friend, or a family member. A physician must make a written referral to the hospice. Life expectancy is limited to approximately six months. This time is not chiseled in stone ... it is an estimate, if the disease continues to progress along it’s natural course, death is likely to be six months or less. One of the other requirements is having a primary caregiver in the home to assist the patient 24 hours a day.

I have been witness to the remarkable kindness of people responding to those who thought they lacked family or friends for the necessary 24 hour assistance. In one instance, an elderly gentleman lived alone above a hardware store. The entire 28 person staff of the store took turns staying with him, 24 hours a day, so he could be in the hospice program.

Another example was a 79 year old sister staying with her dying 73 year old “kid sister.” They spoke of two church groups mobilizing into four hour shifts to keep the patient(s) attended, calling it “a labor of love.”

One of the most outstanding stories, though, was about a man who lacked 11 days for full insurance coverage, including death benefits, at his place of employment. Because of regulations, he had to be on-site physically to earn the coverage. His co-workers loaded him into a hospital bed-equipped van each day and took turns caring for him while he remained in the van, on-site for the necessary 11 days.

While many think of hospice as a ‘place’, it is truly a philosophy, a way of thinking. The Hospice focus is palliative or comfort oriented, rather than curative. Hospice could be compared to a three legged stool .... Physical, Emotional, and Spiritual ... without any one ‘leg’ the stool tumbles. Hospice is composed of a unique team of professionals; the doctors, nurses, social workers, Clergy, Bereavement Care Coordinator, home health aides, and perhaps, more important than any other, the Volunteers ... they are the back bone of this concept ... they are it’s life line.

The rewards of volunteering go beyond the pleasure of helping others. Giving time and effort promotes a sense of emotional and spiritual well being. A great sense of satisfaction can come from making a positive impact in the lives of those who are dealing with the profound issues associated with a terminal illness.

Volunteers offer emotional support and practical assistance to the patients and families, usually in the patient’s home. Duties can include helping with activities of daily living, sitting with the patient, providing reassurance or companionship for patients and families and being an attentive and sympathetic listener.

What does one say to someone who is terminally ill or to the wife or father of a dying person? What phrases could possibly be a match for the enormity of such pain and loss? What can you say? “I’m so sorry” ... not “I know how you must feel” for you truly don’t know exactly how that person feels ... but with just a simple “I’m sorry” you have shared your feelings, you have opened a door. Dying can be very lonely, if you can’t share your feelings. Let “them” tell you what they want you to know. To listen, to be there, to accept ---that is the emotional first aid we can offer each other when bad times comes.

The point of visiting is not, of course, to dump your own troubles at the patient and his family’s feet, anymore that it is to match stories of sickness and suffering. But you can listen for cues. And if the person seems to want to explore deeper water and you are courageous enough to follow, it can be a time of intimacy and trust that is incomparable. To convey love and warmth and respect is the most valuable kind of emotional support. Your presence alone does that, so don’t let worries about what to say keep you away. The one gift only you can bring is yourself.

After a person has died, your thoughts turn to what you can do for the survivors. Again, the answer is much the same; Be there for them. Listen to them. Accept their grief. Do call. Do go. Do reach out. Don’t be put off by the thought that you won’t know what to say. To bring emotional support to someone in crisis requires only this: Be loving. Be there.

When I heard the words "History is made up of what we do and record now," I immediately thought about Legacy tapes ... We often helped patients record a verbal history for their families. My daughter states that she treasures the hand written journal that her grandmother gave her six years ago, before the Alzheimer’s robbed my mother of those memories. Writing my own life history is something that I’ve started, with the help of a wonderful book by Bob Greene “TO OUR CHILDREN’S CHILDREN - Preserving Family Histories for Generations to Come.”

The following quote came from the National Hospice Association : "Death is not the ultimate tragedy of life. The ultimate tragedy is the depersonalization- dying in an alien and sterile area, separated from the spiritual nourishment that comes from being able to reach out to a living hand, separated from a desire to experience the things that make life worth living, separated from hope."

Hospice is many things, but especially HOPE. Hope is not pretending that troubles don’t exist ... It is the trust that they will not last forever, that hurts will be healed and difficulties overcome. It is faith that a source of strength and renewal lies within to lead us through the dark to the sunshine ....