The Christmas of 1995 was the last 39-year-old Brent Watts would experience with a sense of normalcy. In January of the following year, he was told he had cancer. Devastating as this news was to Brent, his family–wife, Felicia, and two daughters, Allyson and Lauren–was sure Brent would survive. However, further invasion of the cancer caused him to forsake additional treatment. Brent and his family decided to focus the time he had left on being together in their Bowling Green home.
As difficult as it was to accept what he could not change, Brent made decisions early in his illness about how he wanted his last life experiences to be. One of those decisions was to include Hospice of Southern Kentucky in his care.
Now, more than three years after Brent died, Felicia Watts talks about the influence hospice had on the final weeks of Brent’s life. Felicia says, “He wanted hospice to be part of his care so he could stay home as long as he possibly could to be with the girls.”
Hospice assisted Brent and his family in managing his pain, and later in taking care of his daily needs. But Felicia feels that the biggest source of comfort was in the caring support the hospice workers provided. This support allowed Brent to be home and allowed the family to be very active in his care and near him until the very end. Felicia sums up their hospice experience with two words–love and caring.
The hospice concept is an ancient one. The word “hospice” referred in medieval times to a place of rest and shelter for the sick and the weary. In Kentucky, there are 25 licensed hospice providers at 48 locations and 1,174 hospice employees, making it possible for hospice care to be offered anywhere in the state.
Hospice’s philosophy is for support and celebration of life and a quality end-of-life experience. Although the philosophy statements of each hospice organization may differ, the essentials are the same. The Kentucky Association of Hospice and Palliative Care philosophy statement reads, “(We are) dedicated to the belief that no one should die alone, afraid, or in pain. To this end, our members provide comfort-oriented care and emotional support to dying people and their families.”
For most, hospice conveys the idea of pain control for those dying from cancer. But hospice is not only for cancer patients. At least one-third of the more than 11,500 Kentucky patients served by hospice in 2001 experienced non-cancer related illnesses, such as heart disease, pulmonary disease, Alzheimer’s disease, and stroke. Private insurance, Medicare, and Medicaid benefits cover hospice care for cancer and other life-threatening illnesses.
Kentucky hospice organizations provide much more than pain management. Services involve the medical care of physicians, nurses, and physical, occupational, and speech therapists, but also include home care aides and homemaker services, social services, spiritual support and counseling, and bereavement support. Along with these groups of dedicated professionals is also an army of dedicated volunteers numbering 2,356 strong.
Selene Negrette, a social worker from Hospice of the Bluegrass, says, “The beauty of hospice is in the idea of holistic care. We give care that involves all of the medical, emotional, psycho-social, and spiritual needs of the patient and family.”
On this September afternoon, Negrette and hospice nurse Andrea White are visiting with another hospice patient, 82-year-old Feb Parrish. Feb sits in a porch swing on the back deck of her Lexington home; on her face is a look of calmness as hummingbirds flit and hover among the many bird feeders and carvings hanging from the rafters. Perched on the swing, Feb resembles a bird herself with her bright eyes and silver hair cut close and neat to her head.
Some months ago, Feb, after suffering a light stroke, was diagnosed with brain cancer. With little hope in the way of treatment, she decided not to pursue a cure. She was released from the hospital and returned home. When her son, Ron Wash, learned of his mother’s diagnosis, he and his wife, Chris, closed up their own home and moved in with Feb to care for her.
Now hospice visits with Feb several times a week. Although, fortunately, she is not now experiencing any pain, hospice is contributing to her care in a positive, proactive manner.
Feb’s daughter-in-law, Chris Wash, arrives from work and talks with the hospice nurse about concerns with Feb’s deteriorating physical condition. Chris and her husband are experiencing difficulty in moving Feb in and out of bed and in providing her daily care. Wash’s expression, initially anxious and tense, relaxes as a plan is established to have a hospital bed placed in the house and to increase the home health aide visits to five days a week.
When asked about her illness, Feb’s answers are short and slow to form. A mist from her disease is slowly descending, impeding her ability to communicate with those around her. However, there is a definite response when Feb is asked what she likes best about hospice. A wide and brilliant smile slowly forms as she says, “I like being at home.”
Being able to remain at home is important to hospice patients. Brent Watts’ widow, Felicia, tells how Brent’s room became the center of their home. She says, “We took the kitchen table into his bedroom and all the activity of the house took place there. The girls did their homework there and that is where we ate our meals. The girls were very involved in his illness; they fed him and took care of him.”
Allyson, Watts’ oldest daughter, who was 12 years old the time, often slept in the room with her father so Felicia could get some well-needed rest. Their already-close family became even closer during Brent’s illness. Felicia goes on to say, “I truly believe that is what helped the girls to understand and to be able to go on after Brent died.”
Hospice is most effective at making the final life experience a positive one if they become involved early in the illness. Andrea White explains it is frustrating when hospice workers become involved with a patient only near the end. “We end up treating wounds instead of preventing them, or we deal with poor nutritional status after the patient has already stopped eating. And their pain is harder to manage once it is out of control.”
Lisa Spoden, executive director of the Kentucky Association of Hospice and Palliative Care, says that earlier entry into the hospice system is one of the organization’s goals for next year. “We hope to provide education to medical professionals on determining the best time for hospice to become involved. Physicians are trained to save lives; they are not always trained to deal with the issues of the dying.”
Another goal is the implementation of a statewide system for end-of-life planning with advance directives or living wills. Spoden says, “We would like to see a respect and honor for patients’ end-of-life wishes across the healthcare continuum.”
These goals go hand in hand with the hospice philosophy.
We all face the reality of life–that it does have an end. If we could make the decision of how our lives will end, most of us would wish to die at home, without pain, and with the people we love around us. There is a comfort in knowing that hospice can help make that happen.
RECEIVING CARE FROM HOSPICE
Who is eligible for hospice benefits and how to get introduced to the hospice system:
You are eligible for most private pay and Medicare benefits when:
* you are eligible for Medicare Part A (hospital insurance);
* your doctor or hospice medical director certifies that you are terminally ill and probably have less than six months to live;
* you sign a statement choosing hospice care instead of routine covered benefits for your terminal illness; and
* you receive hospice care from an approved hospice program.
INTRODUCTION TO THE HOSPICE SYSTEM:
After a probable terminal diagnosis, contact a local hospice through the social worker at your medical facility, through your physician, or call the Kentucky Association of Hospice and Palliative Care at (888) 322-7317.
You will be visited by a hospice social worker to learn more about you and what care is needed.
Your physician will be contacted to make sure he or she agrees that hospice care is appropriate for you.
You will be asked to sign consent and insurance forms and the hospice election form. This form says you understand that care is aimed at pain relief and symptom control rather than cure. The form Medicare patients sign also explains how electing Medicare hospice benefits affects other Medicare coverage for a terminal illness.
Sauntering toward the Camp Nabe dining hall, retired police officer Green Stewart wrapped a comforting arm around his “Little Buddy,” 11-year-old Jeremy Scott Curry. The burly, first-time camp counselor and the pre-teen had grown close during their three days at Camp Nabe. Supper on this last night would be bittersweet as everyone joined one final time to sing the camp theme song, You Will Always Be A Part Of Me.
Camp Nabe, a hospice-sponsored bereavement camp in Salt Rock, West Virginia, serving Kentucky, Ohio, and West Virginia, pairs volunteering “Big Buddies” with needy “Little Buddies,” ages 8 through 16, who are grieving the death of a loved one. For three days and two nights, young boys and girls and their Big Buddies eat, sleep, laugh, cry, work, and play together. They read, color, and draw personal illustrations in the camp textbook, titled When Someone Very Special Dies.
“The whole idea is for the child to recognize the grieving process–you teach the child to grieve,” says Stewart.
The name Camp Nabe originates from the Korean word “nabe,” meaning butterfly, says Mary LaRosa Pritt of Hospice of Huntington, West Virginia, and a Big Buddy at Camp Nabe.
As the story goes, at the end of the cocoon process the butterfly comes through as a new being from the different stages of trauma. The child, like the butterfly, is a healthier person after mustering the strength to get through the pain and grief of bereavement.
Huntington College biology professor Jim Arnold, a.k.a. “the bug man,” demonstrated that metaphor when he arrived with dozens of live butterflies in a glass cage.
“There was a butterfly for each Big and Little Buddy. Kids pulled them out with a cotton ball on a stick and walked around with them. They were so impressed–they thought that was really cool,” says Pritt.
The “llama lady” brought her fuzzy flock for the kids to pat, and the Camp Nabe grand finale was an interactive performance by Jeff Hohman, dubbed “the reptile guy,” a biologist for East Kentucky Power Cooperative in Winchester.
“We held salamanders and got way down to look into snakes’ eyes,” says Mariah Blackburn, 9, of Ironton, Ohio. “I picked up snakes and put them around my neck. I used to be afraid of snakes, but now I’m not. I feel stronger now.
“During Buddy Talk you can talk about being afraid, even of snakes. Just like you can talk about death, how it makes you feel. It’s only for them to hear, and they’ll never tell,” says Blackburn.
The best thing about this program is that it brings kids and adults together, says Green Stewart.
“People today are isolated from each other, some have no real families. At Camp Nabe, kids can laugh together at a silly frog. And they can cry together about a special person who died.
“This is my first experience with a hospice camp, and I’ve come to find out that Big Buddies are really mental health ministers. And I think, what’s an old ex-soldier and ex-cop doing here? But when they asked who was coming back next year, my hand shot up.”
For more information on Camp Nabe, contact Wilma Justice at Community Hospice of Ashland, (606) 329-1890.
If you are interested in becoming a hospice volunteer or would like more information about hospice, contact the Kentucky Association of Hospice and Palliative Care, P.O. Box 130, 1389 U.S. Highway 127 South, Suite C, Frankfort, KY 40601, or call (888) 322-7317. Go online at www.kah.org to find the nearest approved hospice program.
MORE HOSPICE WEB SITES
Kentucky Association of Hospice and Palliative Care: www.kah.org
National Hospice Organization: www.nho.org
Hospice Web: www.hospiceweb.com
Hospice Foundation of America: www.hospicefoundation.org
The National Hospice and Palliative Care Organization: www.nhpco.org