Palliative care improves quality of life for cancer patient

Sue Kochendorfer, right, stands on the porch of her Fort Atkinson home with Trina Clutterbuck, her Rainbow Palliative Care registered nurse case manager. With the help of Trina and the other Palliative Care teammates, Kochendorfer's quality of life has improved as she continues to pursue aggressive treatment for metastatic cancer.

FORT ATKINSON -- Three months ago, Sue Kochendorfer couldn't imagine having enough energy to paint her house, let alone even wanting to get out of her recliner.

"You just want to shrivel up in that recliner and hope everything goes away," said Kochendorfer.

Kochendorfer has been battling cancer on and off since 2013. The last few years her cancer has gotten progressively worse, starting in her breast and then spreading to her lymph nodes and other parts of her body. There is no cure for metastatic breast cancer and the five-year survival rate is 22 percent.

Even though the statistics aren't in her favor, Kochendorfer isn't giving up and will keep on fighting. She is still actively pursuing chemotherapy and radiation treatments but her pain had become unbearable and her quality of life was starting to deteriorate.

"I was in excruciating pain, it got to the point where I couldn't even walk. My daughters had to shuffle me around and drive me. I actually had to go to the chemo clinic just to rest. I lived in my recliner daily for over four solid weeks. Then finally they (the doctors) said that's not a good quality of life."

After a conversation with her oncologist about finding any alternatives for managing her pain, Kochendorfer was referred to Rainbow Palliative Care. But until looking at the brochure she got from her doctor, she didn't know anything about palliative care or if it could help, but was willing to try anything.

"I had never heard of palliative care," Kochendorfer said. "I thought when they talked about Rainbow that it was strictly hospice. So I'm thinking they're wheeling in the bed and then I thought, no, it's not my time yet."

Palliative care is a specialized medical care for people living with advanced chronic illness, which can be anything from kidney disease, heart disease, Alzheimer's disease, COPD, stroke, cancer or any other serious illness. Its goal is to improve the quality of life for both the patient and their family. Palliative care can be appropriate for a person of any age and at any stage in serious illness. Unlike hospice care, the patient can be seeking aggressive, life-prolonging treatment while they are on palliative care.

Rainbow Palliative Care was launched in the spring of 2016 following a six-month pilot project in collaboration with five physician practices. The Rainbow Palliative Care team consists of Nancy Ryan, nurse practitioner, Trina Clutterbuck, registered nurse case manager, and Shannon Finger, social worker and chaplain.

Initially, Rainbow Palliative Care was available only to patients living at home, but in August of 2018 the program was expanded to include seriously ill patients living in nursing homes and assisted living facilities. Before this expansion, Rainbow Palliative Care only cared for 20 patients a day on average. Now that number has grown to over 60 patients a day.

Anyone can make a referral to Rainbow Palliative Care. It can be a doctor or a facility, but it can also be a family member, a friend, or the patient himself/herself that may call and request a visit from the team. The only requirements are that an order is needed from the patient's primary care provider and that consent is granted by the patient. Once that is in place the team reaches out to the patient and their family to discuss ways on how palliative care can help them live better.

After the Rainbow Palliative Care team reviews the information that they obtained during the initial visit, a plan is developed based on each patient's unique individual needs. Rainbow Palliative Care is also in constant communication with the patient's primary care provider and any other specialists involved to help coordinate care.

Some other key features of the Rainbow Palliative Care program include educating the patient about their illness and its possible progression, assisting with advance care planning, discussing goals of care and discovering what is most important to the patient and their wishes for future treatments.

The Rainbow Palliative Care team develops care plans that fit each individual's needs.

"The things that worked for Sue may not work for another patient," Clutterbuck said. "It starts with a conversation with the patient not only about their illness, but so much more. What is it that they want to do that they have not been able to do? And how can we as the Rainbow Palliative Care team make that happen?"

"They were always willing and on board with me to keep trying," Kochendorfer said.

Kochendorfer has taken it upon herself to start spreading the word to others about Rainbow Palliative Care. "I really want to get palliative care out there. I took it upon myself to explain what it actually is. People need to know. I did grab a stack of brochures. And my doctor said, what are you doing with all those? And I said I'm going to promote palliative care."

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