Willie Johnson, 94, has a failing heart and is waiting to die.
Johnson, of 2304 Young Rd., is living at home and enjoying not being confined to a hospital, looking at the walls and growing bored.
“I’ve been up and down and seen bad and good. God’s been good to me,” Johnson said. “I told them this is my home. This is where momma died and this is where I want to die, but I won’t know the difference. When I die, don’t put me under machines; just let me go.
“I’ve been here a good while. I thank God for that. I want to be here when he calls. I guess I prayed to God and asked him to take care of me. That old man upstairs is mighty good.”
Willie Johnson’s Wisdom
There was a buzzard in a field with some crows.
The farmer came out and shot the crows and the buzzard.
The buzzard looked to the farmer and asked, “I’m not a crow and I wasn’t eating your corn. Why did you shoot me?”
The farmer, on turning away, replied, “I know you’re a buzzard but you’re hanging with the crows.”
So be careful of your associations or they may get you shot.
Johnson’s daughter, Carolyn Clark, said she would rather see him at home than in a hospital or a nursing home.
And yet, many people are not aware that they can spend their final days at home with care that equals and in some ways exceeds that which a hospital can offer. The program which is allowing people throughout the nation to stay at home close to their loved ones during their last days is called Hospice.
Hospice is described as “an extensive comprehensive program that meets the needs of the terminally ill and their family throughout their last days, months, and weeks,” by Jane D. Evans, the Hospice director of the Central Arkansas Area Agency on Aging, Inc.
Evans said the Central Arkansas Hospice program has been based in North Little Rock since its inception 15 years ago. It serves a 50-mile radius with 45 employees, many of whom are home health aides.
Hospice began in way stations established for Holy Land pilgrims by the religious knights of the middle ages. It was revived in London in 1967, as a program to help the terminally ill. The Hospice movement began in the United States in 1978 in Connecticut, and now there are 1,800 Hospices throughout the nation.
Evans said people think the program is for old people, and indeed 75 percent of Hospice patients are elderly, but a significant number of patients in the Hospice program are under 65.
“It meets the tremendous need to let people do the work they need to do before they die,” Evans said. “They have their goodbyes to say and things to do before they can peaceably die.”
Sometimes people want to see life-long friends before they die, Evans said. The program also attempts to help the patients carry out their final requests, she said.
“One 55-year-old patient had intestinal cancer,” Evans said. “His primary concern was for his wife not to have financial concerns once he was gone. Through the help of the program, he was able to get the work finished. He died within a week.”
Patients are allowed into Hospice only if they are terminally ill, Evans said. Hospice emergency care is on call 24-hours-a-day, seven-days-a-week, she said. She said the program accepts clients regardless of their ability to pay.
“It is a model for health care reform,” Evans said. “It’s available in every country and it’s incredibly cost effective.”
Evans notes a patient must pay $1,000 per day in a hospital, but patients in Hospice spend $100 a day. In addition, the patients are able to stay home with their families. “In this area of medication, in my opinion, it is one of the greatest things to come along in years,” Bill Price, a 65-year-old lung cancer patient, said.
Evans said the program’s main caseload is cancer, but it has also dealt with Parkinson’s Disease, AIDS, Pulmonary disease, kidney failure and congestive heart failure. She said the critical person is the attending physician, with whom the Hospice team works.
“The attending physician directs the case,” Evans said. “They have to sign the certification. They make it possible for us to do what we need in the home.”
Rod Handley, a registered nurse in the program, said each patient reacts differently to the program. For some, it takes two or three weeks to use the program to its fullest potential, he said. Part of this procrastination stems from the fact that when patients are told they are terminally ill, they get a “shock to the system,” he said.
In a typical day in the Hospice program, the patient undergoes a pain assessment, Evans said. Once the pain is under control, the people can think about what’s going on in their lives and deal with their anxieties, she said.
“(Hospice) tries to keep the patient comfortable without pain in his crisis situation until he passes away,” said 70-year-old volunteer John Goodwin. “It’s beyond curing the individual. The doctor has given up. It makes the patient as comfortable as possible until he passes away.”
Price, of 5 Longview Dr., is not sure when his time will come, but he does not want the pain associated with his cancer.
“What the program is trying to do is eliminate pain. So far, they’ve done a pretty dog-gone good job,” Price said. “I won’t be completely pain free but I’ll stay close. I have pain that I can live with and still know everything.
“None of us know when our time is coming. It has given me the peace of mind that I’ve got a rough idea (of when his time is coming). At least I hope I have. It allows me to make a few more decisions that otherwise I couldn’t have made.”
Goodwin, who works with Price, said he obtains great satisfaction from being in the program, although it is a tough job.
“It’s a difficult job in a way because they’re terminal patients,” Goodwin said. “Once they have accepted (death), it gives them the opportunity to complete unfinished business. I’m so pleased that the government supports and finances such a program. It allows the patient to be at home in their natural surroundings where their loved ones are.”
Goodwin believes the program is well organized. He said he attended 10 two-hour training sessions on the program. Goodwin has been doing volunteer work for AARP. He has a gerontology background.
“I think as we get older we all realize that death is natural. It’s a part of living. We have to accept death; it’s a part of life. I deal with the patient by telling them that I care. I believe they recognize when you are sincere. I feel that no man is an island and that we are our brother’s keeper,” Goodwin said.
“It gives me great personal satisfaction to assist people that need a helping hand. They’re going through a crisis. “
Mary Price, Bill Price’s wife, said the program has given her the peace of mind to know someone can answer her questions and give help when she needs it. She said family members can come by without the restrictions of hours at a hospital, and thus have more time to be with him.
Goodwin said volunteers and patients become attached to each other. Volunteers give respite, companionship and medication to the patient, he said.
Goodwin said he reminisces with his patients as it brings back pleasant memories and accomplishments which increase the patient’s self esteem.
“While they may not be a Kennedy or a Clinton, every family has accomplishments to be proud of,” he said. “I give them the opportunity to talk about their problems which decreases their sensitivity to the problem.”
There are multiple physicians, clergy and registered nurses at the home of the patients, Evans said. Because they are around death so much, the nurses get to the point where they know when the patient is going to die, she said.
Evans said there are symptoms when people begin to die, including:
- patient does not eat;
- patient’s skin color changes;
- patient’s level of consciousness decreases; and
- patient’s pain reaches its peak and then begins to level off.
The nurses almost become “members of the family,” Evans said, so the death is also hard for them.
“You do get close to people you take care of. Each death is significant, but the work is so meaningful,” Evans said. “If you can do it, it’s really energizing. Very often, a dying person teaches us how to let go. There is a great deal of wisdom in dying people.”
She said the program has services for the aides to talk their problems out, and provides stress management for the nurses. There is also a chaplain who counsels the nurses, she said.
The last few days are peaceful for the patient although the family is under stress, Evans said. It is not unusual for a nurse to be at the bedside when death comes, she said.
Once the individual dies, the patient is taken to a predetermined funeral home. The Hospice team then counsels the family, and the volunteer follows up with the spouse and immediate family for up to a year to help them in the bereavement process, Goodwin said. He said he would encourage people to volunteer for the program as it is “possibly the most self satisfying volunteer work available.”
Evans said Medicare requires 5 percent of Hospice services come through volunteers. She said the program is always recruiting volunteers.
“(Volunteers) are essential in bringing the persons back to the community,” Evans said. “Volunteers represent the community of family that comes from the churches and schools. They remind us and the clients that we’re all in this together, working together to take care of one another.”
The program currently has 15 volunteers on staff who serve in all sorts of capacities, from directly helping the patient to doing administrative work, Evans said. Some work one hour a month, while others work 20 hours a week. Evans said persons interested in the program should contact volunteer coordinator Susan Kuehner at 688-7462.
This article first appeared in the North Little Rock Times on Feb. 18, 1993.