Dying in America is associated with pain, being away from home, isolation from family and friends, tubes and IV's stuck into our bodies, being awakened for blood tests, x-rays, pills, shots and food we don't want. Certainly, dying is associated with a lack of dignity. The family is exhausted from grief and responsibility and worry about spiraling medical expenses. It is a terrible time -- with little relief for anyone.
A recent CNN survey of 988 dying cancer patients revealed that doctors seldom talk with their terminally ill patients about their impending death. The study found that doctors don't deal with the many issues that dying patients list as most important to their last days. They include ''being mentally aware at the end,'' ''not being a burden on their family'' and ''coming to peace with God.''
Increasingly, though, we are understanding there is an alternative to this painful and common scene preceding death. It is hospice care, and it is available in our community.
Picture this. A dying person at home in his own bed, with freedom to do as he pleases and is physically able, playing cards with the grandchildren, laughing and reminiscing with family and friends. And all are supported by a team of the family minister and/or hospice chaplain, family doctor, social worker, nurse, nurse's aide, trained volunteers and other social services as necessary.
This hospice team comes to the home and helps the dying patient and family cope with grief, depression, fear, pain, loneliness, overwhelming decisions and responsibilities. Hospice care can also be provided in a nursing home or hospital, and the hospice staff coordinates the individual patient's program with that of the other facilities.
And the cost? Hospice care is covered by Medicare, Medicaid and personal insurance policies. Both hospice services in Galesburg turn no one away for hospice care. However hospice care is for the terminally ill who are expected to have less than six months to live. The patient, family and family doctor must have decided that continued medical procedures will not help and that comfort and care and dignity of the dying person is paramount. Medicine and treatment for the terminal disease are stopped and medication is given only for pain or other physical problems the patient may have.
In a nursing home, the Hospice care provisions of Medicare and Medicaid replace those for a skilled nursing program or bed. Home health care is not hospice care, and one cannot have both. Medicare and Medicaid pay for medical equipment and supplies needed at home for hospice care, such as a special bed. The hospice service takes no responsibility for paying the bills but will assist the family in seeking financial assistance or filing insurance claims.
Hospice service-providers are on call 24 hours a day. The trained volunteers help with shopping, light cooking and other errands. Sometime they just keep the patient and family company. The rest of the hospice team of chaplain, social worker and medical personnel pay regular visits and are on call. At the time of death, the hospice team can make the necessary arrangements. They support the family for a year after the anniversary of the death, by providing counseling and support groups and recognizing birthdays and anniversaries.
The two hospice organizations in Galesburg are Community Hospices of America at 256 South Soangetaha Road and OSF Hospice, near the OSF St. Mary Medical Center.
Community Hospices of America celebrated its sixth anniversary on January 10th. It is an offshoot of Prairieland Hospice which was established in 1987 as a ''volunteer'' hospice -- not certified for Medicare or Medicaid. The merger with Community Hospices of America enabled that certification. They serve an average of 17 hospice patients at a time in Knox, Warren and Henderson counties.
Sue Myer joined Prairieland Hospice as a staff person in 1988 and became executive director in 1989.
''The concept of hospice care is an old one,'' said Myer, ''starting when the Crusaders were injured and nursed back to health. At the time of the Bubonic Plague, no one could cure it, so 'comfort stations' were established.'' She said the first hospice began in this country in 1974 and now there are now 2,500 such services in the U.S.
Myer said that in the mid-1980's Anita Reinerstson and Dr. John McClean of Galesburg explored the feasibility of a community-based hospice in Knox and Warren Counties, beginning the hospice movement here and establishment of Prairieland Hospice in 1987.
OSF Hospice was established in 1997 and is directed by Jane Carr. ''A lot of people don't know about hospice and sometimes people live longer because of a hospice situation.'' She feels the more relaxed and comfortable atmosphere of hospice care contributes to well-being of the terminally ill patient. OSF requires that a hospice patient have a care-giver in the home. Community Hospices of America doesn't have that requirement.
Even with the six month life expectancy requirement, Carr says ''There is no limit to care. Only God knows for sure when a patient will die. We've had people who got better and walked right out of hospice.''
Carr said guidelines for hospice care are being developed for other diseases besides cancer -- such as Alzheimer's and emphysema. OSF hospice is serving seven patients at this time.
Carr's observation that some patients may live longer under hospice care is supported by an article called ''Love and Chicken Soup,'' provided by Community Hospices of America. The article points out that food is so symbolic of love and nurturing in our society that family members get upset when a patient no longer wants to eat. A natural reaction is to want to begin nutritional supplements, tube feedings or intravenous nutrition, when in fact, loss of appetite is one of the natural steps of the death process. The article states: ''But published facts now indicate that the use of forced nutrition in terminally ill persons is of questionable benefit and may actually worsen the patient's condition.''
''Intravenous nutrition or forced feedings can lead to several harmful effects in the terminally ill, such as nourishing a tumor rather than the patient, causing intestinal distress and pain and risk of serious infection from the IV.'' True weight gain with these methods is marginal, say the studies. The gain is usually attributed to fluid retention.
Referring to OSF staff and volunteers, Carr said, ''I think people have a calling. It's not depressing because we are helping make a person's last months as happy and comfortable as possible.'' A quote on one of their pamphlets says eloquently, ''It's hard to know,'' said the nurse, ''if I am holding your hand or if you are holding mine.''
Myer of Community Hospices raises the issue of young people affected by death. ''Our youngest patient was 2 years old and our oldest, 98,'' she commented. ''We have a children's library and loan books to families and schools. We work with District #205 as part of their crisis program. We've already been called to the high school twice.''
CHA has a pamphlet called ''Helping teenagers cope with grief.'' It points out that teenagers experience death too, of parents, siblings, friends or other relatives, all of whom have shaped their rather fragile personalities. Given the vulnerability of teenagers, it is a particularly tough time for them but they seem to get the least support. Parents tell them ''life will go on'' and ''be strong'' and underestimate the pain of the younger person, who may also be adept at hiding it. Teenagers are also apt to lose a friend or parent suddenly, by heart attack, accident or suicide.
Support groups, where teens can meet with peers in a similar situation, are one approach to deal with grieving teenagers. It's especially hard for teenagers to lose a parent at a time when relationships with parents may naturally not be very solid. That causes feelings of guilt and unfinished business, added emotions for the teenager. The pamphlet says that how adults respond when a loved one dies has a major effect on the way teens react to the death. Not talking about the death does not relieve the pain or sadness. It is important to mourn and share feelings with others.
Myer says not only is it alright to laugh during this time before death of a terminally ill patient, it's very important. ''Community Hospice has videos of Laurel and Hardy movies and others because laughter is a great diversion from pain and depression.''
Someone enjoying the hospice care program of Community Hospices of America is Alice Clark of Galesburg. Having had extensive surgery, chemotherapy and radiation treatments for cancer, her family and physician recommended a hospice program. ''Nobody said anything about a nursing home,'' said Clark, ''and it's a good thing they didn't.''
She lives in her home by herself and does light cleaning and cooks her own meals. She has two daughters, one of whom lives in Wataga with her husband and grandchildren, the other is a surgical nurse in Northbrook. Her family is supported and helped by visits from her nurse, Debra Florio, who has worked for CHA for five and a half years, and four-year volunteer Penny Wedemeier. Other hospice team members taking part in her care include a chaplain, doctor, social worker and nurse's aide.
Mrs. Clark doesn't care if someone calls, ''just so it isn't during 'The Price is Right,''' she laughs. An obviously content and happy woman, Clark isn't in much pain right now, takes an Excedrin once in awhile, medicine for her sinuses and vitamins. She has been in the hospice program since December 1st.
She was Alice Unger, born and raised in Knoxville and lived in Arkansas until her husband, Arthur, died eight years ago. Her family brought her back up to Galesburg to live. Clark spends time writing letters to the friends left in Horseshoe Bend, Ark., taking care of her flowers and attending her church in Wataga. She is very annoyed that, after three tests, she was not able to renew her driver's license.
Irene Bruce and Clark have been friends since childhood. Of her role in hospice care, Bruce said to Clark, ''I have to report how bad you were.'' In Mrs. Clark's kitchen, with best friend Irene, Debra Florio and Penny Wedemeier, there is much teasing and laughter. Mrs. Clark's eyes twinkle with fun and her white hair glistens in the sunlight. There are six dice on the kitchen table and scores from dice games nearby. With enthusiasm, she explained how to play.
She reminisces about her family and shows photographs of her parents and siblings. ''Do you remember Virginia's Ice Cream?,'' she asks. ''Well, my father and Virginia's father were twin brothers. They were born in 1865.'' The youngest of six children, Mrs. Clark is 84. Her older brother is 96.
This reporter visited her sister-in-law in a hospice facility in Des Moines, Iowa the second weekend of November. She learned about 18 months ago that she had cancer and at the age of 88 decided not to have treatment. She wanted to die at home, but the situation became too complicated and she entered a free-standing hospice ''home'' in October. Her room was like a living room with a bed. A bird feeder hung outside her window, attracting an amazing collection of pretty birds, watched by patient and family alike. Family members were allowed to come and go as they pleased. She was allowed to sleep as long as she wanted and was then asked, ''Do you feel like eating? What sounds good?'' She was given bubble baths, which she loved, and her hair was shining. That weekend we saw her sitting up in a chair, (not moving) and in her bed. She was alert and animated. We talked and laughed and visited with her and her children. My husband and I told each other it was hard to believe she was expected to die in the next two to five weeks. Days after we left, she went into a coma and died 17 days later.
Susan Ellis is director of the Illinois State Hospice Association and said that there are no free standing hospice facilities in Illinois but several are in the planning stages. St. John's hospital in Springfield has a special section for hospice patients.
''The reason there aren't more hospice facilities is because the standards are stringent and building is expensive,'' she said. ''Most hospice care is in the home and that is preferred. We are seeing a change in society. Family members are not there anymore so there is a growing interest and demand.'' The hospice programs and licensing are directed by the Illinois Department of Public Health.
Directors Myer and Carr both believe that people aren't aware of hospice services and want to spread the word. ''We go to the schools and are available to talk to groups, '' says Myer.
A quote in one pamphlet seems to sum up the positive philosophy of hospice care. ''There is no cure for birth or death except to enjoy the interlude.''