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How Hospice Helped One Man Live |
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A few years ago, when Don Lepper's son, Mark, met his wife, Jeannie, Don told his son he wanted to be his best man when he got married. His son never forgot. On August 23, 2003, Don Lepper got his wish-his last wish. Don was diagnosed with lung cancer in July 2002. After eight chemotherapy treatments and 40 radiation treatments, the physician recommended a more aggressive chemotherapy treatment.
A Social Work Coordinator, Linda Idoine, LSW, from Hospice of Robinson Memorial Hospital spoke with Don and his family to inform them about the choices available through hospice after receiving a call from their son's fiance, Jeannie, who is a Hospice volunteer.
Don remained undecided until he was able to speak further with his physician and clarify treatment options. "He was emphatic about his life not being extended artificially, and at the same time, he wanted to live as well as he possibly could," says Idoine. After Don and his wife, Mary, learned this more aggressive treatment would rob him of his immune system and take away his bone marrow, and that he'd possibly spend his last days in an Intensive Care Unit, he made the decision to call Hospice of Robinson Memorial Hospital.
"I was on call the night Don called our after-hours service to get more information about what hospice provides," says Linda Williams, RN, who later became his nurse. "Anyone can request hospice; most times patients don't call for hospice themselves, but they can." "We didn't know what hospice was, we thought it's where you go to die," said Don.
Hospice Responds
After Don was admitted into the care of Hospice of Robinson Memorial Hospital, a thorough psycho-social assessment was con-ducted by Idoine, which measured his goals, values, what was most important to him, who was important in his life and his life story. "We find out what their life has been about, what they have accomplished," said Idoine. "The many strengths they've used throughout life help give them the strength to shape this part of their life."
Don's goals were to stay in his home, be with his wife of 56 years, enjoy his grown kids and go to Amish Country. "Our role is to make sure the care plan meets their needs. Don wanted to stay in his home. So, when he needed support to achieve this goal, we worked through the process of how to make this happen," says Idoine. "Depending on the person, we may bring in volunteers, perhaps a nurses' aide, and we call a family meeting to determine who in the family is available and when.
A care plan is mutually developed that meets the needs of the patient and family and is flexible enough to change as needs change." Through hospice, a lot of counseling is done. Hospice is for the whole family, they are there because of the patient, but the focus of hospice is the entire family. "I focused a lot of my time on Mary," Idoine says. "She was aware she wouldn't be able to stay in her home of 36 years. She was dealing with facing her husband's death and no longer being able to stay in the home they built together due to her own health problems."
Don helped Mary make plans for her future by going and visiting assisted living facilities and helping select the best place for her. He was very involved in ensuring her future was planned, and that was part of him coming to a good end-knowing she has plans for life without him. He was still involved in caring for Mary in a way nobody else could. "Part of my job was to make sure plans were in place for Mary and to help her with that adjustment as she went through the process," says Idoine.
The Nurses' Role in Hospice
According to his nurse, Linda Williams, Don had a great attitude. He knew where he was going and focused on that path. He had a strong faith, which was a major source of his strength. "The first time I met Don and Mary, he told me, if you don't have a smile on your face when you come here, you'll have one when you leave," Williams remembers.
The role of the nurse is to support the family and manage a patient's symptoms. Those symptoms may include pain, shortness of breath, constipation, nausea, emotional distress and spiritual distress. Through hospice, diagnostic testing is not routinely done, but the focus is more on treating the symptoms and providing comfort.
"When I go into a patient's home, I always ask about pain and do a full assessment each visit," says Williams. "Most patients in hospice don't see the physician anymore. When they are having a good day, they don't usually want to spend that day going to see the doctor. The nurse is in communication with the physician, and the physician trusts the nurse."
"The nicest part of hospice is that I don't have to go to the hospital anymore," said Don. Williams usually went to the Lepper home two times a week. But she and all the nurses from Hospice of Robinson Memorial Hospital were flexible to make a visit when it was convenient for the family and as needs changed.
"I always tell my patients this is a business of change; if you have a better offer than my visit that day, then call and reschedule my visit," she says.
"With hospice you don't have to be homebound. Don was driving up until the beginning of September." A Team to Care When You Need Them Most It's more than a nurse and a social worker supporting the patient and family-an entire team is available to care for the many physical, emotional and spiritual needs of a person at this important time of life. But the team is not in the home all at once, they come and go as needed and do as much or as little as a family wants from them. As the needs of the patient and family increase or decrease, the team adjusts to meet those needs.
"Some people get concerned we are going to bring a lot of people into their home," Idoine says. "We adjust to their needs and can become as involved as they want us to be. We provide the education and support that allows the family to confidently care for a loved one at home at this very important and intense time of life." For Don and Mary, volunteers brought in meals and did housework for Mary. A nurses' aide visited regularly to help with bathing, personal care, getting the mail and making the beds.
A chaplain is also available, but the Lepper family had their own minister. "What's bothered me most is we have always helped others. It's very tough when the cycle reverses-hospice has really helped us," said Don. Hospice is not about dying, it's about living your life to the fullest extent possible and then ending it well.
It's about living according to your own wishes and values until the very end. "I want to go out with a song rather than a groan," said Don. I want to be able to fully enjoy life and my family." "They are all angels," said Don and Mary. "Our impression has totally changed. I came to Hospice of Robinson Memorial Hospital to live what I have left to live," said Don.
A Happy Ending
The wedding of their son, Mark, to Jeannie, was a complete surprise to the entire family, including their minister son, Larry, who was asked that day to marry them. "We were sitting at their house on the patio, when Mark said, we better get started, I need someone to be my best man." Don stood up as the best man and Mary stood up as the matron of honor, in a wedding that will be told for generations to come and that granted one man, who cared more about his family than anything else in life, his last wish.
"I had told Mark and Jeannie, I want you to get married while I'm still here," said Don. And that's exactly what they did!
Services available through Hospice of Robinson Memorial Hospital
A Registered Nurse on-call 24 hours
Home Health Aides for personal care
Medical Social Worker for emotional and bereavement support
Volunteers for meals, grocery shopping, reading, caring for patient while main caregiver takes a break
Chaplain
Registered Nurse
Helping fill out Advance Directives (Living Will and Durable Power of Attorney)
Education for children in the home
Hospice covers medication costs that are needed for a patient's care related to their primary diagnosis.
Come to your home, whether that is in a nursing home or a residence
Hospice covers any durable medical equipment, oxygen, and supplies
Physical therapy/speech therapy/ occupational therapy
Bereavement support for family for 13 months after the death
For more information, to refer a patient or to make a donation to Hospice of Robinson Memorial Hospital, call (330) 297-8899. |
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